Room 385

March 2012

It would appear that my luck was finally turning around. Dr. Satan had been defeated, and I was feeling better! I enjoyed having my brother home from college on his spring break, and I was looking forward to my spring break the following week. Spring was starting to bloom in Des Moines, and on one beautiful morning my mom and I went on a walk to the local library. This was the first time in a long time that I had gotten any exercise, and it felt so good. The warm spring breeze felt refreshing on my skin; my arms were still bruised and sore from all the blood work that I had done at the beginning of the year. I wandered around the library and checked out a wide variety of books to read over spring break. I had also made some plans to meet up with a few friends. The next day was Monday, and since there was no school for me or my sister, us girls were going shopping. I had a long list of Pinterest-inspired crafts that I wanted to do so my mom and I went to some craft stores in the morning. In the afternoon, my mom, sister, and I went to the mall. I tried to enjoy shopping, but I suddenly did not feel well. The abdominal pain was pretty much gone, but I seemed to be experiencing more of it while shopping. It was a different kind of pain though. I wrote in my journal that my "bowels hurt". I also had a strange foreboding feeling. It's hard to explain, but I just had a weird feeling about the upcoming week. I tried to push all these thoughts out of my head, but the pain seemed to be growing worse as the day proceeded. I wasn't able to babysit by myself that night so my mom came with me. The pain was very bad when I got home from babysitting. I could not figure out what the problem was. As I lay in my bed trying to fall asleep, I noticed that the pain, which had been all over my abdomen, had shifted toward the right side of my abdomen. Before I fell asleep, a thought suddenly came into my mind:
It's my appendix.

March 20, 2012
When I woke up the next morning, my mom was sitting by the side of my bed. She was very worried about me; she called Dr. S.'s office but all of his appointments were booked for the day. My abdominal pain was at a level two when I woke up, and it was still on the lower right side of my abdomen. I was supposed to babysit that day, but my mom and I decided to cancel. I ended up taking a nap that morning, and when I woke up around 10:00 my abdominal pain had hit an all-time high of a level eight. Besides waking up from having my gall bladder removed, this pain was one of the worst I've ever had. Due to the location, I was convinced my appendix was infected. My mom called Dr. S.'s office again and pleaded for an appointment. Somebody (most likely Nurse T.) had snuck me in at noon. While getting ready to leave, I didn't know what to expect. If my appendix was the problem, would I have to have surgery today?! Anticipating a long day, I brought Harry Potter and the Deathly Hallows with me. I was in so much pain that I had trouble walking from the car to Dr. S.'s office. Nurse T. could automatically tell that something was very wrong. Dr. S. could also. He asked if the car ride to the appointment caused more pain? While I had been uncomfortable, I didn't experience any more pain than I was already in while riding in the car. Dr. S. pushed down on the lower right side of my abdomen, quickly released, and then asked how that felt. It hurt!
"Do you know what's down there?" Dr. S.
"An intestine?" I guessed, even though I knew what it was.
"An appendix! I think your appendix is infected."
"Well, that really sucks...."
"Nah, it doesn't suck if removing it makes you feel better!" Dr. S. said with his usual enthusiasm. "I think you need to go entertain a surgeon."
I asked if I could see, Dr. R., the surgeon who removed my gall bladder. Dr. S. called Dr. R.'s office across the street, but Dr. R. wasn't going to be back in the office until 1:00. While I sat in the exam room, Dr. S. suggested that I not eat or drink anything in case I would have to go into surgery. So many questions, fears, and worries were running through my head. I canceled them out by reading my Harry Potter book. Eventually, Dr. R. called Dr. S. back and told him to send me over to the emergency room where things would move faster. On our way out, Nurse T. asked my mom to call once we knew what was going on. We drove the short distance to the emergency room. This was my second visit to the ER; the first visit was when I broke my arm when I was eight years old. That was at the other hospital, though. As is typical at a hospital, we had to park ridiculously far away. Walking was so difficult! I somehow made it into the ER, and I remember wishing that I was wearing a mask in case c.diff was floating around. I checked into the ER with two nice ladies who both told me that it was a "great day to be a pediatric." I wasn't sure what that meant, but I hoped that it meant I would get an answer quickly. I had to sit in the waiting room for a little bit until a nurse called my name. She also told me that it was a good thing that I was a pediatric patient. She led me into a very small and cold room inside the pediatric ER. There was a gurney, two chairs, and a counter and cupboards filled with medical supplies. The nurse asked lots of questions about my medical history, family history, and personal questions about thoughts of suicide. NO! Just get me a surgeon! I wanted to shout. Since it was so cold, the nurse brought me a warm blanket and I laid down on the gurney. She asked me if I wanted to watch TV or if she could bring me any movies, but I said that I would rather read my book. I was so thankful for the distraction of Harry Potter! There was a knock at the door, and a medical student and resident came in. I'm pretty sure my mom and I were both thinking the same thing: please go practice on somebody else! They were both actually very kind and educated. The student had a thick African accent and joked about how he was trying to be cool when his ear buds got tangled around his stethoscope. Both the student and resident asked the same question about the car ride to the hospital. After examining me they said they were going to talk to Dr. R. and then come back. It was at this moment that I learned how slow hospitals move. I was so glad that I had my book to distract me. At some point, Dr. R. ordered a urine sample, blood sample, and x-rays of my abdomen. Since I wasn't allowed to eat or drink anything, the nurses put an IV in to keep me hydrated. A Child Life specialist came in and gave me a speech written for a four-year-old about why doctors want to stick needles in their patients. I politely listening, and when asked if I had ever had an IV put in before, I responded: "Oh yeah, lots of times."
"Oh. So you already know everything I just told you." The Child Life specialist stated.
Since I was dehydrated, it took the nurses several tries to get the IV in. Eventually they got it in my left arm, which isn't the usual side the IV pole is on. It was somewhat funny to watch the x-ray tech awkwardly struggle with a left-sided IV pole as she wheeled me to the x-ray. After the x-ray, I was wheeled back to my tiny ER room. I was so exhausted from the pain, but I couldn't fall asleep. The urine sample and x-ray were normal, and the surgical resident came in to tell me about the blood test. My white blood cells were not elevated (there was no sign of infection in my blood) so the surgeons doubted that my appendix was the issue. However, they were uncomfortable sending me home with level eight pain so they wanted to admit me to the hospital. Never in my life had I (or my parents or siblings) been admitted to the hospital. I just wanted to go home, sleep in my warm bed, and cuddle with my cat. My mom called my dad and sister and asked them to bring my stuffed owl, Hedwig, and We We, the teddy bear my grandparents gave me when I went to Iowa City. I knew leaving wasn't a good idea, but I was so scared to be in the hospital. Only really, really sick people had to stay in a hospital. Shortly, a nurse came in with a wheelchair to take me to the pediatric floor. I had seen billboards advertising the newly refurbished pediatric floor, and now I was going to get a first-hand look at me. Lucky me. The nurse, my mom, and I got on the elevator and the nurse pushed the button to go to Floor 3. Before the doors closed, two of the biggest police officers I have ever seen stepped on. They both gave me kind looks, and I laughed at the idea of them being like body guards. When we reached the 3rd floor, the nurse said to the receptionist, "This is 385.", and I remember thinking, oh great...I've become a number. I actually don't remember getting from the receptionist's desk to my room, but I remember being weighed and trying to get comfortable in the bed. A nurse and tech were immediately in and introduced themselves. They were both very nice and friendly. They told us where my mom could go to get food and what the nighttime routine was like. The surgeons had ordered that I have a clear liquid diet for the rest of the day and then nothing after midnight. The nurse was very concerned that I hadn't had anything to eat or drink so she brought me some apple juice. Once I was finally left alone, I took in my room. It had a green theme to it, and it was huge! I had my own private bathroom, a big TV, a pull-out couch, a recliner, and a big window. Above the head of the bed, there was a colorful mural of a clownfish in a sea anemone. There were two dry erase boards, one had "Room 385", my nurses' names, and a spot for notes. My bed was surprisingly comfortable for a hospital bed. It could re-adjust in just about 1,000 different ways, and there was a big round light about it. I really liked how bright and colorful the room was. One of the nurses suggested that I get a heating pad to put on my abdomen so I pressed the call button on the side of my bed. I thought it would summon a nurse to my room so I was surprised to hear a pleasant voice come through the speaker asking me what I needed. I requested a heating pad, and it was brought to my room. It didn't take the pain away, but it was very comforting. A clear liquid diet was brought up from the kitchen, consisting of jello, chicken broth, an assortment of drinks, and apple juice. I had a few bites of the jello, and it was disgusting! I pushed the tray aside and drank some apple juice. The nurse told me that on the pediatric floor they keep track of everything that goes in and out....that means bathroom business. My dad and sister, Rachel, arrived with a bag full of stuff for me. Not only did they bring my stuffed animals, but Rachel also packed my sleeping mask, iPod, charger, and Sudoku puzzle book. We talked for a while and then my dad left. Rachel stayed behind and we watched TV and played Draw Something on our iPods. Rachel stayed for a few hours and left promising to return in the morning. I ended up having to text my friends and cancel our plans. As bedtime got closer, I started to get nervous. The nurse told me that I would be woken up every four hours to check vitals and the on-call resident surgeon would also be in at some time. We had asked for pain meds, but the surgeons didn't want to "mask" the pain. The night-shift nurse had taken over, and she told me that she was very impressed at how I was handling level eight pain: "I would have hit the roof a looooong time ago!"

The fish mural

Even though I didn't want to be there, my mom and I talked about how it was probably a good thing that I was there. My symptoms had landed me in the hospital, and it was time to get this figured out once and for all. I talked to my brother on the phone before settling down for bed. I was worried about how the night would go and what the morning would bring. Somebody at some point in the day had told me that they would check my white blood cells again in the morning. After saying goodnight to my mom, who was sleeping on the pull-out couch, I listened to some Christian music on my iPod. I couldn't fall asleep due to the amount of noise. I was very surprised at how loud the hospital was at night! My IV kept beeping, I could hear other IVs on the 3rd floor beeping, there were lots of banging, clanging, and other strange noises coming from other parts of the hospital, and it seemed like ambulances were coming and going constantly. Since I couldn't sleep, I laid in the bed and just thought. Part of me couldn't believe that I was in the hospital. I had been under the roof of this same hospital for ultrasounds, scopes, x-rays, and other nuclear medicine tests, but I had never spent the night here. The other part of me was relieved. I wasn't going to leave this hospital until I had an answer because it was time to get an answer and be done with being sick.

The cross in my room

March 21, 2012
It seemed like I had just fallen asleep when the nurse woke me up to check my vitals. She told me that it was after midnight so I couldn't have anything to drink. In between being woken up every four hours for vitals, the hospital helicopter was constantly waking me up. My room must have been close to the helicopter pad, and the loud noise and shaking of the building woke me up several times. It made me sad to think of how many people were in life-or-death situations in just one night. At 2:30 a.m., the on-call surgical resident woke me up. He asked how my pain was--like I was really going to give him a definite answer at 2:30 in the morning! At 5:30 a.m., the surgical resident who was with me in the ER came in. I was annoyed at being woken up at a ridiculous time, and I was supposed to answer how I felt. As far as I could tell, my pain was the same. I went back to sleep and woke up on my own at 7:30 a.m. My pain was still at a level eight: no better but no worse. Blood was drawn to check my white blood cell count, and my sister came back bringing a supply of food for my mom. We watched the Today show until my nurse came back with the results from the blood work. My white blood cells were still not elevated, meaning there was no sign of infection in my body. A surgeon (I was relieved to see a doctor and not another resident) came in shortly after the blood work results came back. The surgeons had completely ruled out appendicitis. So what was causing the severe abdominal pain? The surgeon wanted me to try walking around, eating, and then see how I felt. His suggestion was to bring in either a gynecologist or a GI doctor. He asked if I had been any of the hospital's GI doctors. I told him that I last saw Dr. Di in October.
"He's good...he's very good." The surgeon replied.
It was decided that I would walk around the floor, eat something, and then see how I felt. The nurses instructed us on how to order something from the cafeteria. I was nervous that the cafeteria would contaminate me with gluten, but they did a great job handling my dietary needs. My mom explained that I couldn't have gluten or dairy and my food couldn't come in contact with gluten. I ordered gluten-free toast with no butter and some peaches. While waiting for my food to come, my mom, sister, and I took a walk around the floor. I felt so pathetic walking around in my hospital gown with my mom pushing my IV pole, but it did feel good to stretch my legs. I was also able to take in more of the floor. It was so bright and colorful! There were blue, green, orange, and yellow tiles on the floor that matched the color of the rooms. Towards the end of my short stroll, I felt wobbly and dizzy. My mom was amazed that I hadn't ate anything in 24 hours, but I still wasn't hungry. I got settled back in my room before my breakfast arrived. The toast was definitely from a store-bought loaf of gluten-free bed (all you GF eaters out there will understand what that means!), and the peaches weren't too bad. While I ate my breakfast, my mom, sister, and I watched episodes of Downton Abbey off of Netflix. After I finished eating, I felt worse. I had horrible nausea and the pain was more intense. I had so much pain that I felt like I couldn't move or breathe. The resident surgeon was called, and my nurse put Zofran (an anti-nausea medicine) through my IV. While she was putting the medicine through my IV, I received a surprise visit from Nurse T.! It was so great to see a familiar face. After chatting for a little bit, Nurse T. suggested that we ask if Dr. Di could come over to the hospital, since it seemed obvious that my pain was caused by a GI problem. After Nurse. T. left, the resident surgeon came in and we asked if Dr. Di could see me. The resident was on board with our plan and left to call Dr. Di. Meanwhile, I was detached from my IV! The nurse told me several times that I keep drinking apple juice to stay hydrated. Rachel had left to bring back a fresh change of clothes, and I was so looking forward to changing! After changing into fresh and clean clothes, it was time for lunch. Absolutely nothing sounded good so my mom ordered a random assortment of food from the cafeteria. Rice, green beans, and canned pears were sent up. I wasn't too thrilled with the rice, but the pears were good. However, those green beans were the best green beans I have ever had! Even to this day, I'll get a  craving for the hospital's green beans. They were just plain green beans from a can, but they tasted so delicious! After my revelation about hospital green beans, my nurse came in and told me that Dr. Di was on vacation. Dr. G., the adult GI who oversees Dr. Di's patients when he's gone, would be able to come instead. After she left, I got upset. I officially wanted to go home. I was in so much pain, I wanted to see Oliver, I didn't like how the bed felt anymore, I was exhausted from being woke up so many times, and I wanted my doctor to come and see me. Ever since my experience with Dr. Satan in Iowa City, I was very suspicious of new doctors. I just knew I wouldn't like the adult GI who came to see me, and he would be a total flunky. I read my Harry Potter book to take my mind off things and then went for another walk around the floor with my mom. Once I was back in my room, a med student who was doing her GI rotation came in. My mom and I gave her the whole story, and then she left saying the adult GI doctor would be in shortly. Dr. G. was an older and gruff doctor with a pierced ear. While listening to my story, he was confused on pain vs. nausea but eventually got the story straight.
"I don't know." He said while shrugging his shoulders.
While doing a physical exam, he asked if I ever had headaches. I told him that I had a daily headache, and that seemed to help him decide on a diagnosis: irritable bowel syndrome
***********************************************************************************
Irritable bowel syndrome (IBS) is a disorder that leads to abdominal pain and cramping, changes in bowel movements, and other symptoms.
***********************************************************************************

Me with the bear my
grandparents gave me.

Dr. G. gave us the history of IBS and then said that all my symptoms (especially the daily headaches) pointed to IBS. With IBS, the colon often squeezes down and doesn't release when it should, causing abdominal pain. Dr. G. said that the pain on the right side of my abdomen was probably caused by one of these infamous IBS pinches. Dr. G. prescribed dicyclomine--an anti-spasm medicine often used to treat IBS. The medicine could make me feel more sleepy than usual. What was even more thrilling than a diagnosis was being able to go home! Dr. G. wanted me to come back for an abdominal ultrasound, but he said I could go home once it was cleared through the surgeons! Dr. G. said I would need to have a follow-up appointment with Dr. Di in about two weeks if the dicyclomine wasn't helping. After he left, I wasn't sure what to think. I had actually "self diagnosed" myself with IBS twice while on my WebMD app late at night. I was relieved to have a diagnosis, medicine, and a ticket out of the hospital! There was just so much to process. The discharge process took a very long time so my mom ordered me one last meal in the hospital. I had a peanut butter and jelly sandwich on GF bread, canned fruit, and another order of the delicious green beans. I felt awful after eating; I began to feel unsure about leaving the hospital. I kept asking my mom if it was okay for me to leave when I felt so horrible. As I look back on my time in the hospital today, it actually went by quickly. The residents, doctors, and nurses who kept coming in and out helped the time pass by quickly. I read my Harry Potter book a lot, and that really helped distract me. I was weirdly paranoid about the private bathroom door and door to my room being opened. I thought that keeping the doors closed would stop germs from reaching me. Having Rachel around was a huge help! It was, after all, her spring break too. Even though both our spring breaks weren't going as planned, we managed to have a somewhat fun time watching TV, playing on our iPods, doing Sudoku puzzles, and Rachel quoting something from Grey's Anatomy every time a page came over the speaker. She even made me a sign on one of the dry erase boards! 

Rachel's sign

The discharge papers came along with a nurse and a wheelchair. I tried to convince her that I could walk (because I knew I could walk faster than she would push), but the nurse insisted that I ride in the wheelchair. Even though I still felt terrible, I was thrilled to leave the hospital. The nurse pushed me and my stuffed animals in the wheelchair down to the first level, where Rachel was waiting with the car. I don't really remember the car ride home; I had never been this exhausted in my life. I remember walking into my house and being greeted by Oliver. Since I'm such a germaphobe, I wanted to take a shower to wash off any potential germs. My mom also did a load of laundry full of both our clothes and my stuffed animals. After I showered, I finally did what I had been wanting to do ever since I went to Dr. S. yesterday (yes, that was only yesterday): sleep in my bed. Curled up with my purring cat, everything that had just happened finally hit me. I felt overwhelmed and sad about how my Spring Break had ended up. Before I could get too worked up, I fell into a deep sleep that would go on for 11 hour uninterrupted, non-IV beeping, helicopter landing, vital checking slumber!

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......

 

 



The Devil Wears A Lab Coat

*Before you read any further, I would like to say a few things. This time of my life, January to February of 2012, was the darkest time of my life. Writing this post was very difficult; I had to re-face the pain and hardships that I tried so hard to put behind me. It is all part of my story, though. Please keep in mind that I did not speak to anybody about what you are going to read, and I would like to keep it that way. I don't want to re-live the experiences that I talk about in this post because they are too painful and have a very negative affect on me.*

I was as ready as I would ever be on January 23, 2012. I was armed with Harry Potter and the Deathly Hallows, my iPod, and the teddy bear that my grandparents sent me. Iowa City is two hours away from Des Moines. My mom and I did school in the car, and I listened to comforting Christian music for the rest of the trip. Since my brother went to the University of Iowa, I had been to Iowa City several times. Usually trips to Iowa City were very fun and enjoyable; this trip was different. My dad found a parking spot in a ramp, and we ate sandwiches that my mom packed before going into the hospital. The hospital was huge! A man in a suit was waiting in the main lobby to help direct patients. The man instructed us on how to get to Pediatric Specialty. Once I was checked in, there was a lot of paperwork to fill out. I was expecting to have to wait forever, but less than five minutes later my name was called. The nurse said that they were running ahead of schedule due to cancellations from the weather. After taking my vitals, the nurse led us on an unending path to a cramped exam room. After plugging in all of my medicines (I was still on antibiotics for Lyme's disease and steroids from the inflammation in my nose) and going over my symptoms, the nurse told us that the doctor would be in shortly. We probably waited for 20 minutes, but it seemed like hours. I could not stop the bad gut feeling that I had. I wanted to run as far away as possible from the hospital, but I engrossed myself in my Harry Potter book. There was a knock on the door, and a small man wearing a lab coat came in. He commented that Harry Potter was a good reading choice and then introduced himself. My mom presented him with a huge packet of notes, timelines, and even a menu of what I ate. The doctor reviewed all of the medicines I was on and what I was currently struggling with. I did my best to explain that I had constant nausea that was worse after I ate, unexplained weight loss, and lack of appetite. The doctor was very keen on discussing the weight loss. Yes, I had lost 37 pounds, but I never felt hungry and most foods didn't look appealing. He asked if I was drinking Boost or Ensure, which I wasn't. Instead I was drinking a more natural, and better tasting, drink called Orgain. My mom said that we bought it at the Vitamin Shoppe in Des Moines.
"Hmmm...vitamins don't have calories." The doctor stated while doodling on his note pad.
"No, we buy it at the Vitamin Shop." I corrected, rather snippy.
The doctor then started criticizing and disagreeing with everything my doctors in Des Moines were doing. According to Dr. Know-It-All, there was no way Prednisone would bring my sense of smell back. Antibiotics wouldn't help Lyme's disease (in fact, the aches and weakness were much better), and none of the other medicines my two GI doctors in Des Moines tried were at the right dose. The doctor declared that there were no other medical problems; my nausea was due purely to the fact that I was not eating enough. He told me that I looked "emaciated". Eating more and gaining weight was the final piece of the puzzle. I had already tried one appetite stimulator, but this doctor knew of a very strong appetite stimulator that was often given to patients with cancer: megace. With this appetite stimulator, I would feel so hungry that I would not care about my remaining nausea. I would gain two pounds per week on this medicine. To make sure I was gaining weight, the doctor wanted me to have weekly weight checks at my pediatrician, Dr. S.,'s office, and he wanted my weekly weight faxed to him. When my mom asked what his plan was if eating more didn't decrease my nausea, the doctor said that he would prescribe amitriptyline, a medicine that my first GI doctor had tried. The doctor was very confident that eating more would make me feel 100% better. He then told me that I need to eat more fried food, cheese on everything, cream instead of milk on cereal, and a Big Mac with fries. Hold up....first of all, I could not tolerate fried foods because of the grease. The doctor completely blew that off. Second, how is somebody on a gluten-free diet supposed to eat a Big Mac?! The doctor admitted that was a bad example, but encouraged me to eat McDonald's French fries. My mom then explained that the fryer was cross-contaminated with gluten. No, according to the doctor, since the fries are fried at 400+ degrees there wouldn't be any cross-contamination with gluten. I suppressed an eye roll, and my mom and I exchanged wary looks. Did this doctor know anything? The doctor gave us his business card with his e-mail on it and encouraged me to e-mail him with any questions. A follow-up appointment was made for a date in March. I was so discouraged and disappointed with how the appointment went. I had already tried eating more, and it was SO difficult for me. I was hoping for a medicine or a very specific test that would show something treatable. I was disappointed with the doctor--he was allegedly the best one in the clinic. The doodling on the notes, criticizing of my Des Moines doctors, and the whole McDonald's argument was too much to handle. I just knew the appetite stimulator wouldn't work--I have a bad history of medicines not working. We met up with my brother for a little bit before heading home. I was very upset on the way home. While I didn't have my hopes up for anything miraculous coming from Iowa City, I was still crushed.
 I started the megace the very next morning, January 24. It was a liquid that I drank once in the morning, and it was disgusting! It wasn't going to kick in right away, but my mom decided that I should start eating more right away. I felt so full, bloated, and cramped. The portions on my plate seemed huge, and anything that could be covered in cheese was covered in cheese. Even though eating was painful, I remembered Dr. Di's words ("push past the nausea") and fought past the discomfort. The second day on megace was completely unexpected. I took the dose in the morning and then sat down to study for a biology test. About 10 minutes later, the weirdest feeling washed over me. It was like that feeling that we've all experienced: you're home alone when all of a sudden you could swear you hear footsteps in the empty house. At first that panic feeling sets in; you feel tense and your heart is pounding, and you don't even think to breathe. That's exactly how I felt, but I didn't have anything to panic about. I was studying for a biology test, and I remember actually being quite bored. My chest felt tight, and it was difficult to breathe. Of course, symptoms like these that come out of the blue caused me to panic. I rushed into the living room where my mom was, and she immediately knew something was wrong. I explained how I felt, and my mom was just as bewildered as I was. I was also very aware of my heartbeat; I could feel and hear it pulsing in my ears and throughout my whole body. Suddenly I felt so tired and exhausted that I laid down on the couch and fell asleep. While I was napping, my mom had done some research on megace. It turns out that difficulty breathing and tightness in chest are very rare side effects. When I woke up from my nap, I felt like I could breathe better but my chest felt even more tight. My mom called the doctor in Iowa City who told her that I was just "anxious" because the medicine would make me gain weight. Of course, that was a load of crap so my mom called to make an appointment with my pediatrician, Dr. S. It was just my luck that it was Wednesday, and Dr. S. doesn't work on Wednesdays. My mom's second pick is a nurse practitioner, Sham, who is part of the office that Dr. S. is in. Sham could see me that afternoon so I wasn't able to make it to drama practice. I took another nap that morning because I was so tired.
 Sham wasn't sure what was going on, but she ordered blood work, a chest x-ray, and a scan of my lungs. She wanted me to come back first thing the next morning to see Dr. S. Due to the seriousness of my symptoms, Sham wanted a doctor's opinion. She brought in a doctor, Dr. El., who made the whole visit very enjoyable.
"Hey beautiful! How are you feeling?" Dr. El. asked as he burst into the exam room. Dr. El. has a very thick accent, and he is very nice. He asked if I had been feeling anxious or nervous when the symptoms started. I told him that I wasn't feeling anxious; I was just trying to do school. After the appointment, Sham made me go across the street to the main hospital for the lung scan. On the way out from the office, Dr. El. stopped me:
"Hey beautiful...you call me if you don't feel better, okay, Princess?!"
In the future, Dr. El. will prove to be another incredible doctor who has taken excellent care of me.
The lung scan was no big deal; I didn't like breathing into an oxygen mask for a few minutes though. The techs were so sweet and helped distract me by keeping the conversation going. The scan came back normal so I cleared to go home after being at the hospital from 2:15-5:00. I had a hard time falling asleep that night. Sham said if my symptoms got worse, I should go to the ER. My mom slept with me that night, and I woke myself up every hour worrying about my symptoms. The tightness in my chest was eased a little bit by pressing a pillow against my chest. One of the times when I woke up, I had lost the pillow in my bed. Oliver, my cat, was snuggled between my mom and me on my bed. While purring, Oliver climbed on top of me and laid down on my chest right where I needed relief! And some people say cats aren't smart....
 I was back at the hospital the next morning to see Dr. S. I felt the same; no better, no worse. When I walked into the office, Nurse. T. rushed up to me with a very concerned look in her eye.
"What is going on?!"
My mom just shrugged her shoulders.
After meeting with Dr. S., he called a pediatric pulmonologist (a specialist in the lungs) and told him about my symptoms. The pulmonologist said that he had heard of my symptoms being side effects of megace, but he thought I should have a breath test to check my pulmonary levels. For this test, I had to sit in a special box that resembled something you would see at a video game arcade. The tech instructed me on how to blow into a tube. Sometimes I had to take a deep breath and then blow it out into the tube; other times I had to blow short and quick breaths into the tube. It was a weird test, but my chest actually felt a little less tight (but my stomach more upset) after all those breaths. Dr. S. wanted me to come back the next day to review the results of the test and get a plan.
 The next day at Dr. S.'s office, he told me that the breath test came back normal. The pediatric pulmonologist wasn't concerned about any lung issues, and Dr. S. felt that I wasn't in danger. Even though the megace was making my chest tight (and not making me hungry), it was determined that I should stay on it. Dr. S. had been communicating with the doctor in Iowa City, who made his opinion clear. I tried to not feel discouraged and exhausted as I left the hospital. I had been to the hospital three days in a row: Wednesday, Thursday, and Friday. I kept taking megace through the weekend even though it was still making my chest tight and making me so tired that I fell asleep in church AND after church. There was definitely a direct correlation between taking the megace and my symptoms. My mom e-mailed the doctor in Iowa City to ask how long I was supposed to take megace. I had been on it for almost a week, and my appetite was still very poor. I still "pushed past the nausea" and forced huge portions and snacks down. I was completely miserable.

Dr. ______
As you might have noticed, I have yet to give the doctor in Iowa City a name. I usually refer to my doctors by the first initials of their last name for privacy purposes. I will not, however, be using the first initial of the doctor in Iowa City. Why? This doctor deserves a special and different title: Dr. Satan.
On Monday, January 31, one week after my first appointment in Iowa City, Dr. Satan replied to my mom's e-mail. I was the first person to see the e-mail, and as I read it I could feel my blood boil. Dr. Satan wrote in his e-mail that I was mentally blocking the megace from working and that I was had "anorexia nervosa":
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Anorexia nervosa: an eating disorder that makes people lose more weight than is considered healthy for their age and height. Persons with this disorder may have an intense fear of weight gain, even when they are underweight. They may diet or exercise too much or use other ways to lose weight.
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Dr. Satan also requested that I seek help from an eating disorder clinic immediately. My medical evaluation was fine, and everything pointed to psychiatric issues. He concluded his e-mail by saying, "this is difficult, I know, but it is time."
I felt as if I had been doused with ice cold water. I couldn't move, speak, or think. After my mom read the e-mail, I completely lost it. I started on one of my famous crying rants, and my mom told me that I needed to be respectful of Dr. Satan....that didn't last long. That business card that he gave me in his office? I wrote scathing things on it and shredded it. Dr. S. was consulted, and he did not feel that I had an eating disorder. How could I be accused of something like that? Yes, I did not enjoy eating, but that was because I felt awful after eating. How can anybody who had lived with chronic nausea for nine months enjoy eating, when all it did was make their symptoms worse?! My parents were obviously on my side and wrote Dr. Satan back defending me. I was so furious that I didn't know what to do. I knew I shouldn't have gone to Iowa City, and now I knew that I had been right. In the meantime, I still had a life to live...even if it wasn't a very happy one. I was so stressed out that everything I ate tasted like salt. My mom had the same problem as well. We didn't tell anybody, with the exception of medical professionals and my grandparents, about what Dr. Satan had accused me of. When one of my drama teachers in our homeschool group asked me how I was feeling, I put on a brave face and said that I was trying a new medicine. This teacher told me that she was dealing with some stomach issues as well. She had just been through testing for food allergies, and that gave me the idea of being tested for allergies as well. An appointment was made with an allergist for the end of the month--his next available date.
At the beginning of February, I started to have pain (in addition to nausea) in my abdomen. All of my issues have been with my stomach and not in my abdomen. I thought it was maybe the increase in the amount of food I was eating. Whatever it was, it quickly grew uncomfortable. Even though I felt like I was eating a huge amount of food, I was not gaining weight at my weekly weight checks with Nurse T. My moods and emotions were also out of control. I felt very anxious and clingy to my mom.
The next fight with Dr. Satan came shortly after his accusation of me having an eating disorder. My mom e-mailed him saying that we wanted to stop the megace. It wasn't making me feel hungry, and it was still making my chest very tight and uncomfortable. At the appointment, Dr. Satan had suggested trying amitriptyline if I was still struggling with nausea after trying the megace. Dr. Satan replied that I could stop the megace. He also said that he would not prescribe any medicine until I was evaluated by a psychiatrist. Dr. Satan was more than willing to arrange a consultation for me in Iowa City...like we all didn't know that he would be influencing the psychiatrist! I didn't know what to do at this point. How was I ever supposed to move forward? I so obviously didn't need to see a shrink, but Dr. Satan wouldn't help me unless I did. This was a definite turning point in my hatred toward Dr. Satan. When I wasn't scheming up ways to get revenge, I was so upset. During very weak times, I would cry myself to sleep because of him. I would dream about him and wake up soaked in sweat. Any mention of the University of Iowa, especially the hospital, or eating disorders caused me to panic. I felt my body stiffen whenever I checked the e-mails. If there was an e-mail from Dr. Satan, my heart began to race and I would shake. I needed the right medicine, and it wasn't going to happen until I fulfilled Dr. Satan's request. My mom made an appointment for me to see my pediatrician, Dr. S., to get his opinion. Dr. Satan's e-mail response to that was that I was "excessively thin" and he was "confident" that I had an eating disorder. He also stressed that I seek help before "life-threatening" complications from eating disorders happened.
I am going to break away from the story for a while to remind you of a few things: Dr. Satan is a pediatric gastroenterologist. He is not a psychiatrist or a specialist in eating disorders. Sure, he said he was confident that I had an eating disorder, but what did he base that on? He had judged me before he even met me. I know for sure that he was already thinking about an eating disorder before our first appointment. Another thing, I think one of the many reasons why I was so upset about Dr. Satan was that up until this time, I had experienced nothing but the top care and concern from my doctors in Des Moines. My pediatrician, both GI doctors, endocrinologist, surgeon, and infectious disease specialist were so kind to me. I could tell that they were concerned about me and they wanted to do everything they could to help me. Even though what I was going through was very rough, I had the assurance that the people on my medical team were the best out there. Then I met Dr. Satan. His accusations, arrogance, and pride were so big. He was lazy. He didn't want to actually search for a real answer to my problems; he would rather just blame it on an eating disorder.
 When I met with Dr. S. on February 13, we discussed meeting with a "shrink" to get an evaluation to shut Dr. Satan up. Dr. S. thought it was a good idea to get an evaluation to use as an "insurance policy" so nobody would ever be able to accuse me of having an eating disorder again. Dr. S. gave us the names of several psychiatrist (psychiatrists are usually also MDs so they know about medical diseases as well as mental diseases) to look into. In addition to the shrink talk, I was having new symptoms that were starting to concern me. I had recently started feeling a squeezing and tightening feeling in two areas of my abdomen. The pain was worse after eating, I was more gassy than usual, no relief after going to the bathroom, bloated feelings, and I felt like I had a weight pressing down on my abdomen. Dr. Satan ignored all of these symptoms, and Dr. S. wasn't sure what to make of them. All of my GI issues had been in my stomach, and now all the issues seemed to be moving down toward my abdomen. I was very much looking forward to my food allergy testing at the end of the month. Besides gluten, there were no other obvious food trends. I was a little sensitive to large amounts of dairy so I had coconut milk, yogurt, and ice cream. We made the mistake of telling Dr. Satan in an e-mail that I was going to be tested for food allergies. He replied that I could not have any food allergies because I didn't have any hives, rashes, or wheezing. He also warned us not to let "theoretical concerns" distract us from the "likely problem" of an eating disorder.
At my weekly weight check on February 21, I felt even worse. The pain, tightness, pressure, and bloating in my abdomen was increasing. Dr. Satan was notified of these worsening symptoms, to which he replied with nothing but a "thanks" for the update. February 22 was a very bad day. I was in so much pain that I couldn't make it to drama, and I took a nap in the afternoon. I told my mom that I felt like my intestines were dying. To distract me, my mom came up with the fun idea to do at-home pedicures and play board games that evening. I had so much fun! I laughed hysterically until tears were streaming down my cheeks--most tears recently cried were out of pain, frustration, and anger. It was a bright memory in the midst of all the darkness that I was dealing with. Two days later, the pain in my abdomen woke me up. I had an appointment that day with Dr. S., who ordered a STAT abdominal CT scan. This unexplained pain that kept getting worse had gone too far, and Dr. S. stepped in a did a job that should have been done weeks ago by Dr. Satan. The pain was very intense in two areas of my abdomen: close to my hips on both side. I had a feeling that I was going to be at the hospital for a while so I came prepared with a book. Dr. S. sent me across the street for the CT scan. I had to drink four glasses of contrast in one hour...that's one glass of disgusting chalk-like liquid every 15 minutes. I was thrilled to see that the under-sized CT waiting room had Sudoku puzzles! Sudoku had been a great way get my brain to think about something else. We had to wait forever to be checked in and given the contrast. While I was slurping down the contrast, Nurse T. surprised my mom and I with a visit! It was so great to see a friendly and familiar face. Nurse T. told us her incredible health story and gave us lots of encouragement. She said that she was thinking about me all the time and that her and Dr. S. knew my symptoms were due to a physical problem. She encouraged me to keep fighting because her and Dr. S. weren't going to give up. Listening to Nurse T. helped me get the last glass of contrast down. Ever since her surprise visit, we have developed a very special relationship that I am so grateful for! Finally, it was my turn on the CT machine. An IV with saline was started, and the tech warned me that I would probably taste the saline in my mouth and that I also might have a very strange sensation that I was peeing my pants. She was absolutely right! It was so weird. I was sent into a tube that went up to my neck. An automated voice told me to take a deep breath, and there was a timer on the machine so I could see how long I would have to hold my breath. There was a picture on the celling of a blue sky with clouds. After several pictures were taken, I was allowed to leave the cramped waiting room and wait for the results in the atrium outside the waiting room. My mom and I split a delicious Greek salad for lunch, and I chugged a bottle of water to get the disgusting taste of barium out of my mouth. The CT scan was considered STAT, which would make a person think that they would get answers back immediately. Wrong! STAT in medical terminology is like saying there's only ten minutes left in a football game. My mom and I waited in the atrium for 2 1/2-3 hours before the woman at the check-in desk told us that the results had been sent to Dr. S., and I was to go over to his office. As I walked across the street, thousands of thoughts were running through my head. What was wrong with me? I had a horrible feeling that the two parts of my abdomen that hurt were parts of my intestines that died or something. Would I have to go through another surgery? Was there a huge tumor inside me? What was wrong?

At Dr. S.'s office, he told me that there were no tumors, cysts, or infections in my abdomen, and there were no tangled, blocked, or dead intestines. The cause of all the pain, pressure, bloating, and tightness in my abdomen: colonic constipation.
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Colonic constipation: an ailment where the entire colon is impacted with stool.
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Yes, it's disgusting and nobody wants to think about it, but constipation is a bigger problem in our society than most people think. What caused this? It's still unclear, but it may have had something to do with all the medicines I was on. Dr. S. prescribed a "evacuation" using a lot of Miralax and enemas. I didn't see how being constipated could cause as much pain as I was in. After spending a very long SEVEN HOURS at the hospital, I was ready to be home. Unfortunately, being home meant staying camped out near the bathroom. I didn't know when the "evacuation", as Dr. S. put it, was going to hit. By the next day, I had to drink a bottle of magnesium citrate. That opened the flood gates and let the evacuation take place. To keep everything moving, I drank a mega dose of Miralax three times a day and a magnesium citrate every day for four days. Getting those magnesium citrates down was very hard, but my mom and I looked through old photos of our vacations while I drank it and chased it down with a fun drink. The cleanout was actually helping me feel better...the pain was slowly decreasing! I had even felt hungry a few times. I had a follow up with Dr. S. a couple days into the cleanout. I had lost 1 1/2 pounds during the cleanout, but Nurse T. said that was typical during cleanouts. Dr. S. encouraged my mom and I by telling us: "you are on the final lap of the race". The last missing puzzle piece was the food allergy testing. I had noticed that my stomach felt more queasy when I ate something with dairy so the allergist, Dr. W., told me to go ahead and go dairy-free even though all the food allergy tests came back negative. Dr. W. said I could be lactose intolerant or sensitive to dairy. The dairy-free diet was started right away. I felt so great after that first dairy-free lunch! I can still remember the peanut butter and jelly on a tortilla, dairy-free yogurt, and chips that I ate. I even felt well enough to make it to play practice. My stomach was still a little upset, but it was noticeably calmer without eating anything with milk.
The cleanout ended up lasting from February 24-March 1. It was gruesome, but each day I was feeling better. My mom e-mailed Dr. Satan and told him that the cleanout and going dairy-free was greatly improving my quality of life and symptoms. What did the high and mighty (*sarcasm intended*) respond to that? Nothing. He didn't respond at all. His theory of an eating disorder had just been proven wrong. Not by a shrink, but by the fact that I was dangerously constipated. Symptoms for extreme constipation included nausea, loss of appetite, abdominal pain, fullness, bloating, and pressure on the abdomen. Constipation...not an eating disorder!

TO BE CONTINUED.....

  

January 2012: Crappy New Year!

January 2012



Uncle Mark comes!

While most Americans were starting their New Year's Resolutions of eating healthy, losing weight, working out, etc. I woke up on New Year's Day feeling worse than I had when I went to bed on New Year's Eve. My entire body ached. My headache was horrible and my stomach was very upset, but every single muscle in my body was hurting. I felt like I had been beaten with a baseball bat. I was taking Tylenol every six hours, but it was doing nothing to help my symptoms. I wasn't able to babysit or go to the first drama practice that our home school group was hosting. On the plus side, my dad's brother from Wisconsin had come for the Iowa Caucus!
 Finally, on January 5, my mom took me to see my pediatrician, Dr. S. I hadn't been to see him since April of 2011 when he referred me to the pediatric GI doctor who diagnosed me with celiac disease.
 Let's review my current symptoms: headache, no taste, chronic stomach ache, and body aches. I still wasn't excited about going to the doctor, but I was desperate. The looming date of my appointment in Iowa City was getting closer, and I needed a miracle. When I met with Dr. S., he seemed surprised to hear that I was still struggling with my health. Being my pediatrician, he had read notes from my two pediatric GI doctors, surgeon, and endocrinologist. Dr. S. introduced us to his new laptop that he had to carry around with him. He showed us how he had to update all of my medical history (you can probably image how long that took) and list any present symptoms. Dr. S. mentioned several times how much he hated his new computer; it made the appointment very humorous and enjoyable. If he didn't carry his laptop around with him, he would be charged $50,000! This computer was an obvious problem: apparently "loss of taste" isn't listed in the computer's database of possible symptoms. So Dr. S. pulls out his iPhone and gets on one of his doctor apps to find the medical term for loss of taste. Just in case you're interested, it's ageusia. After Dr. S. satisfied his computer, he told me that he was going to test me for 11 different conditions: mono, strep, flu, walking pneumonia, B-12 deficiency, zinc deficiency, CPK, parvo B-19, sedimentation rate ESR, rheumatoid arthritis, and ANA. I have no idea what about half of those things are, but if anybody with medical knowledge out there is reading this, you might. I was hoping one of the friendly lab techs in Dr. S.'s office could get all these swabs and vials of blood, but their lab was only able to handle the basic tests. Blood was drawn for mono, walking pneumonia, and a basic CBC. Even though I had already had mono, Dr. S. still wanted to check just in case. A strep swab (GAG!) and a flu swab (how I would imagine it feels to be mummified and have one's brains pulled out through their nose) were also drawn. After a while, the in-office results came back. They were all negative. Two samples of the walking pneumonia, strep, and flu were taken and the second sample would be sent to a different lab for confirmation. Next, Dr. S. sent me over to the draw room across the street at the main hospital building. A very small and cramped room, the draw room was occupied by a screaming baby and me, separated with a curtain. Six vials of blood were drawn for the rare conditions that I was being tested for. After being poked and prodded, I was sent home. It was a beautiful day: 60 degree weather on January 5th in Iowa! I desperately wanted to walk around the lake, but I was not feeling up for it. My mom offered to push me around the lake in a wheelchair (ha!), but there was no way on this earth that I would ever consent to that. I could only imagine the looks I would get. In addition to feeling awful, I had to start eating more again. My weight had dropped to 116 pounds, a 37 pound decrease from my pre-sick weight. I downloaded the WebMD app on my iPod and started researching what I was being tested for. A B-12 and zinc deficiency made perfect sense to me. Symptoms included loss of taste, body aches, weakness, loss of appetite, nausea...pretty much every symptom I had!. I had a small glimmer of hope that we had found the answers, but I was wrong. All the tests came back either negative or normal.
I was finding it very hard to cope with the amount of pain my body was in. My mom had to replace my heavy quilt with a lighter blanket because the weight of the quilt was too much. I was also so tired. I took an hour long nap every evening at 5:00. If I didn't nap, I just rested my exhausted and weak body. I tried to update my daily journal, but it hurt too much to write. However, I was going stir-crazy in my house so I slowly dragged myself around the block to get some fresh air. The next day was Sunday, and I was in church with my family when my mom's cell phone rang. She quickly rushed out of church to answer it and came back to tell me that somebody from Dr. S.'s office had called and the second sample for walking pneumonia came back positive! I immediately started the famous "z-pack" that is commonly used to treat walking pneumonia. I was optimistic that this medicine would take away the pain, headaches, and maybe even that chronic nausea...I should have known better. The z-pack is known to take symptoms away immediately, and I was not having any immediate results. Two days later, we got a call from Nurse T. at Dr. S.'s office. She told us that Dr. S. had thought of two more things to test me for: my cortisol levels and Lyme's disease. On the same day as this blood was taken, I had another follow up with Dr. C., my endocrinologist. Dr. C. didn't think any of my current symptoms were related to my thyroid, but she drew her usual lab work anyways. My veins were in very bad shape. Two phlebotomists poked for probably 15 minutes until finally they were able to get the minimal amount of blood needed. My mom said that I was a very unnatural shade of gray during this process. My arms hurt so bad, and they were terribly bruised. The inside of my elbow and about halfway down the inside of my forearm were a nasty yellowish color. Two days after seeing Dr. C., I had another follow up with Dr. S. He had just learned that the Lyme's disease test came back positive! I had heard of Lyme's disease, but I wasn't exactly sure what it was.
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Lyme's Disease: a tick-borne illness, the usual symptom of Lyme's disease is a rash. Other common symptoms are fever, chills, aches, weakness, and headache.
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Ticks already completely gross me out, but now I despised them even more! Had a stupid infected tick really caused me all this pain?! Dr. S. immediately called a pediatric infectious disease specialist at the other hospital, Dr. Casta., who could see me in about an hour and a half. I was very overwhelmed, confused, and worried. As my mom and I left Dr. S.'s office, he reassured us that "we will get everything straightened out." We quickly dashed home, stuffed down some sandwiches, and then drove back downtown to the other hospital. On the way to the hospital, I noticed a billboard advertising the hospital with a doctor playing with a little boy on it. I thought it would be funny if I saw one of my doctors on a billboard. At Dr. Casta.'s office, a very nice nurse called my name and took my vitals. She was so nice and funny. She asked very detailed questions about where I had traveled in the last five years. I told her about the cruise I went on in 2010 and going to Wisconsin a little over a month ago. She said that Lyme's disease can sometimes have a "false positive" in the blood test, but Dr. Casta. could tell us more about it. Shortly after she left, a very familiar looking doctor walked in the exam room. I then realized that I was looking at the same doctor who was on the billboard! Dr. Casta., who is from Peru, was very nice. He said that the blood test isn't very accurate, and the loss of taste, nausea, and weight loss probably wasn't from Lyme's disease. Wisconsin, where I had a blast shopping, is one the most common states for Lyme-carrying ticks. Dr. Casta. told me that he was going to talk to some of his colleagues at the medical school where he trained about me.
"I'm going to be thinking about you." Dr. Casta. said with a smile as he sent us down to the lab. Another six vials of blood were drawn, checking for CVID disease, HIV, connective tissue cascade, T&B cell, and a CBC. As if I didn't have enough going on, I also had an orthodontist appointment on this same day! One day, three doctors, six hours.

Ouch :(

Here is a short recap for you: in one week, I had 15 vials of blood drawn and I had seen four different doctors. I was completely exhausted. Even though I had been tested for 17 ailments, poked with needles, and touched by doctors, I was still very sick. My sister's boyfriend said it best: "She is a sick little girl." My only hope for not going to Iowa City rested with Dr. Casta. Maybe he would find the missing piece of the puzzle in the blood work or maybe one of his colleagues would come up with something.
 About a week later, the nice nurse from Dr. Casta.'s office called. All of the blood work was normal. The only thing left was for me to go to Iowa City on January 23--six days later. I was completely crushed.should have been. As for the loss of taste, it was suggested that I see an ear, nose, and throat (ENT) specialist. I went to our family's regular ENT who noticed that my nose was stuffed up with a lot of mucus and inflammation. The ENT prescribed the steroid Prednisone to get rid of the inflammation and the nose spray Afrin for five days. He was confident that those two treatments would clear my nose up quickly. The appointment with the ENT was on a Friday, and the following Monday was my appointment in Iowa City. For the whole weekend, my mom was determined to keep me busy so I wouldn't think about the appointment. My grandparents were sweet enough to send me flowers and a stuffed teddy bear to take with me to Iowa City! I spent the weekend reading, doing Sudoku puzzles, knitting, painting pottery at Glazed Expressions, and crafting. My mom and I went to see "The Iron Lady", a film about British prime minister Margaret Thatcher, and we also watched Downton Abbey on Sunday night. The weekend was fun and went by way too fast. As I laid in bed on the eve of the appointment in Iowa City, I didn't know what to expect. Way back in October, when my GI doctor suggested that I keep the appointment, it was decided that any further testing that the doctor in Iowa City wanted to do would be done in Des Moines. The appointment in Iowa City should be a meet-and-greet with the doctor, getting his opinion, and following his plan of action. That is what it

TO BE CONTINUED..............

A sweet surprise from my grandparents!

November & December 2011: The Light at the End of the Tunnel

"Sometimes that light at the end of the tunnel is really just another train coming."

November 2011

I was so thrilled to babysit again!

My ever-so-photogenic siblings
on Thanksgiving

I thought I had made it. At the beginning of November, my energy returned. I was able to drive all over Des Moines, and I did. I went to several craft stores to get supplies for the endless list of Pinterest crafts that I had been longing to do. I drove myself to babysit on Tuesday mornings. My mom and I celebrated our six-month anniversary of being gluten-free by eating out at P.F. Chang's. On November 15, my sister and I saw the Broadway production of "Wicked." It was amazing! During the performance, I noticed that my nausea level had dropped to a two! I wanted to cancel the appointment in Iowa City, but my mom insisted that we keep it as a back up plan. It was rescheduled to January 23, 2012. Both my mom and I were confident though that by January I would be completely nausea-free. I was learning to stay away from not only gluten, but also greasy foods and sweet foods. However, the coming of the holidays made it hard to stay away from all the baked wonderfulness that comes with Thanksgiving and Christmas. My family and I went to the East Village's (a small shopping district downtown) holiday open house, where we bumped in to Nurse T. from my pediatrician (Dr. S.)'s office. She told us that she had been reading all the reports that were coming in from other doctors about me. It was so great to tell her that I was feeling better! I felt very thankful on Thanksgiving. My grandma had cooked a gluten-free Thanksgiving feast, and it was delicious. I wasn't even upset by the level two nausea that followed the meal; I was just thankful that it was a level two. My mom, sister, and I went Black Friday shopping for the first time the next morning at 3:00 a.m. It was exhausting, but fun. On the Saturday after Thanksgiving, we went back to my grandparents' for the annual 50 pound candy making day. For over 30 years, my grandma has been making 50 pounds homemade chocolate candy. Along with my aunt and her daughter, we make peanut butter cups, turtles, chocolate dipped pretzels and Oreos, caramels, solids, knock-off Butterfingers, and cream filled chocolates. Candy making is one of my favorite holiday traditions! I could eat almost everything that we made, and we were all careful with cross-contamination.
 I was still "pushing past the nausea" to eat, but I got gotten used to the bigger portion amounts. Since I was trying to eat more, I found comments about my appearance very irksome. I knew I had lost weight; I had lost about 18 pounds by this point. I did not need to be reminded by various people about how skinny I looked. Comments such as, "Do you feel well? You are so thin," and "Have you gained any weight?" and "You must have 0% body fat," and "Oh, I can see it in your face" were not wanted, welcomed, or appreciated. I laughed it off at first, but after a while I was really starting to get annoyed. I came up with several snappy comebacks, but I was never tough enough to use them. I was feeling better, and that was the only thing that mattered to me.
 December brought "Advent by Candlelight", a ladies-only Christmas tradition that our church puts on during the Advent season. Since I couldn't feast on the buffet of desserts, my mom bought individual slices of cake from Specialty Cakes--an Iowa business that creates gluten-free cakes for special occasions. The cake was good, but the company of my two dear friends Elizabeth and Isabelle made the night great. We laughed so hard that my right side was aching with phantom pain. I didn't care though, it felt so great to actually throw my head back and laugh until tears came. I couldn't remember the last time I had done that.
December 10-12 brought my first gluten-free vacation to Wisconsin. My dad, brother, and my brother's girlfriend (now wife) Meghan were going to a Green Bay Packer game with my uncle. While they were at the game, my mom and I had plans to shop at the Oshkosh outlet mall! We did our research and found gluten-free restaurants on the way to Wisconsin and in Oshkosh. Surprisingly, Wendy's has a great gluten-free menu. They even have a page about celiac disease on their website. I was able to eat a broccoli and cheese baked potato and a salad at Wendy's, and two meals at local restaurants in Wisconsin. My nausea level stayed at a two so I knew that I had not been cross-contaminated with gluten.
 I bought my first Coach purse at the Coach Outlet Store in the mall! I got an incredible deal; my mom and I were in the store for an hour and half double checking that the deal was legit. In between finding safe restaurants and my Coach purse, I would definitely say that my first gluten-free vacation was a success!

:)

Back in Des Moines, the Christmas season was moving quickly. I have always been very excited about Christmas, but Christmas of 2011 was different. I was starting to worry about my nausea level not dropping; it had been over a month since it went to a two. In addition to this, I started having daily headaches that not even extra strength Tylenol would get rid of. When we got back from Wisconsin, I began to have trouble eating more. I couldn't put my finger on what was different, but eating had suddenly become very unpleasant again. Finally, I realized that I lost my sense of taste. I could not taste anything. As I test, I tried eating garlic and jalapeño hummus. I couldn't even taste those strong flavors. I felt bad when my mom made me a new gluten-free dish that I couldn't taste. I wanted to give her encouragement, so I often said, "the texture was good." The headaches were starting to get worse. Reading and staring at the computer screen did not help so I found myself bored a lot. I went to the eye doctor to see if my eyes were the problem, but they were not.
 I was still taking cyproheptadine, to increase my appetite, but the constipation side effects were staring to really bother me. My mom called Nurse J (the male nurse in my GI doctor's office) who told us that I could stop taking it. The headaches and loss of taste were still present. I was beyond discouraged. Here it was, almost the end of 2011, and my condition seemed to be slowly getting worse. Would I have to go to Iowa City in January? I started to pray even harder than I already was that I would not have to go.

Grandpa with his present

 The festivities of Christmas Eve church, rushing home, changing into pajamas, and opening presents distracted me from how I was feeling. On Christmas Day, we went up to my grandparents for lunch (I still couldn't taste anything, but I'm sure it tasted good) and opening more presents. I wanted to do something special for my grandparents. They had been so faithful over the year with all their texts, calls, money after surgery, and Grandma's delicious gluten-free baking that she did for me. I made my grandma an apron that said "Grandma's Gluten-Free Goodies", and I made my grandpa a plaque with a picture of him holding me when I was a newborn. I knew they would like their gifts, but I was not expecting my grandpa (former Marine and hardcore farmer) to cry when he opened my gift.
 After the distraction of Christmas was over, my headaches were starting to get to me. I had an appointment with my endocrinologist in January which would show if my thyroid levels were contributing to my headaches. Until then, I was determined to stay busy.

New Year's Eve 2011: I always have mixed feelings at the end of the year; especially this year. 2011 had been a challenge. A celiac disease diagnosis, countless tests, adding "endocrinologist" to the list of doctors who were trying to figure out what was wrong, a doctor who ran out of ideas, a doctor switch, more tests, surgery, pushing past nausea to eat, and unending nausea. It had been a very long year, and I was ready to start fresh. At the same time, I was terrified at what 2012 would bring. I tried to trust in God and not worry about the future, but I could not stop the nagging feeling of dread. My head constantly pounded, I couldn't taste anything, and my stomach was still upset.
 My family's tradition on New Year's Eve is to stay up until midnight to ring in the new year. My mom always makes fun snacks, and we watch the countdown in New York City. As the night wore on, I began to feel worse. I was freezing cold even though I was wearing multiple layers and wrapped in a fleece robe. I was more nauseous than I had been in a very long time, and my body ached all over. With these new symptoms, I went to bed wondering what 2012 would bring as I would wake up the next morning in a new year. Looking back on my journey now, I'm glad I didn't know what was coming in 2012. If I had known......

TO BE CONTINUED.............. 


October 2011: "Hang in There"

I would like to start by apologizing for the absence. School and other things have prevented me from writing as much as I would like. If you don't remember where we are in my story, please look back through my previous blog posts. Here is a short synopsis: Mono in August of 2010, c.diff in November of 2010, celiac disease diagnosis in May of 2011, doctor change in August of 2011, gall bladder removed in September of 2011. That leaves us at....

October 2011

I was eight days post-surgical when I could sleep in my own bed again. I had to sleep on a recliner in our living room to prevent me from rolling over on to my fresh incisions. Sleeping in my own bed felt so great! October 1, 2011, marks the day that I started to tackle walking around a local lake--my favorite place to walk. I managed to get 1/3 of the way around the two mile loop. I wished I could go further, but I didn't want to push myself. I attempted going back to church just nine days after surgery--that didn't go well. I was only able to stay for 15 minutes before I felt extremely tired, and dizzy. My incisions hurt so bad, my stomach was very upset, and I was freezing. When these symptoms still lingered the next day, my mom called my surgeon's office and talked to a nurse. The nurse thought that I probably had a flu bug, and she was right. I was prescribed ondansetron for nausea by Dr. R., my surgeon, but it didn't help. The flu like symptoms thankfully disappeared as quickly as they appeared, and I was on my way back to recovery.

Post-surgical

 With the flu out of my way, I could clearly grasp how I was feeling. Before surgery, my nausea levels were at an 8-10 (scale: 1-10, 10 being the worst), and after surgery, they were at a 4-6. I often became discouraged because I was still constantly nauseated, but my ever-so-positive mother always reminded me that my symptoms were significantly reduced by the surgery. The sharp pain under my right rib cage where my gall bladder used to be
 was completely gone!  Another appointment with the endocrinologist showed that all my thyroid levels were 100% normal! Were the normal levels connected with having my gall bladder removed? I'm not smart enough to answer that question, but it wouldn't surprise me if they were connected.
 On October 7, two weeks post-surgical, I had my post-op appointment with my surgeon, Dr. R. Dr. R. was very encouraged that my nausea levels had been reduced by 50%. He told me that my gall bladder released bile whenever I ate, but now bile was continuously running from my liver to my stomach. Dr. R. said that it can take four weeks for the body to adjust to the new flow of the bile. He also said that it was normal for me to still be sleepy--I was averaging about 12 hours each night. My incisions looked great, and Dr. R. said that he saw my pediatric GI doctor (Dr. Di) who asked about me. That lead us to a not so pleasant topic: constipation. It's common after any surgery, but since my surgery involved removing a vital part of my digestive track...I was kind of worried. My mom explained that she was filling me with very fibrous foods like apple cider and fruit. Dr. R. responded by saying, "We have ways to get rid of that. My methods are more aggressive than apple juice and prunes." With that, he left the room promising to return. I sat in the exam room imaging all sorts of horrible things that he could bring back. He quickly returned with a bottle of magnesium citrate--an extreme laxative usually used for colonoscopy prep. I had already downed a bottle of magnesium citrate so I knew what to expect.  Dr. R. said that constipation causes nausea. Ideally, getting cleaned out and waiting for my body to adjust to the new flow of bile could knock out the last remaining symptom of nausea. If not, Dr. R. suggested that I go back to see Dr. Di.


Babysitting!

 At home, I drank the magnesium citrate and chased it down with a Naked juice (fiber!!) that my sister brought back from college for me. Sure enough, I was relieved the next morning. I also walked all the way around the lake...nine days after surgery! I did not feel well after my two mile walk though. I spent the rest of the day on the couch. I was able to make it to church the next morning. It was great to see everybody again. I also first experienced the bizarre phenomenon  of phantom pain--something that still bothers me occasionally today. It was so lifelike that I often had to look at my incisions to remind myself that my gall bladder wasn't there anymore. I was also able to babysit Lucy and Collin for the first time after surgery.
 As I slowly gained my life back, I began to feel frustrated by not feeling 100% better. Yes, my nausea was much less severe. I was very grateful for that, but I was still desperate for total relief.

"It Sucks to Not Feel Good"
About four weeks after my surgery, I went back to see my pediatric GI doctor, Dr. Di. I was anxious to hear what he was going to say. My worst fear was that another great doctor would run out of ideas, and I would have to go to the specialist in Iowa City. While both Nurse J and Dr. Di were happy to hear that I was feeling better, Dr. Di was still concerned about my weight. At this point, I had lost 32 pounds. I had no appetite whatsoever so eating was difficult, even if I was eating very small amounts. Dr. Di acknowledged that not feeling well (in his words, "it sucks to not feel good") interferes with eating well, but my weight was getting very low. As for the persistent nausea, I had stumped another doctor. Dr. Di said we should keep the November 7th appointment in Iowa City. Until then, Dr. Di wanted to try an appetite stimulator. He thought that maybe eating more would actually help my stomach. I was instructed to "push past the nausea" and try eating more. The thought was very daunting; eating made my stomach more upset to naturally I did not enjoy eating. Dr. Di wrote out a prescription for cyproheptadine:
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Cyroheptadine (cy-pro-hep-ta-dine) is usually used to treat allergy symptoms and hives, but is also used as an appetite stimulant
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The new plan was to try the appetite stimulator. If eating more seemed to be helping with the nausea, Dr. Di would increase the prescription. The November 7th appointment would be kept unless something miraculous happened.
"Hang in there!" Dr. Di said with a reassuring smile before my parents and I left.
I was beyond crushed. I just knew eating more would do nothing but make me feel worse, and I would have to go to Iowa City. My grandpa, however, was optimistic:
"Sarah eats more; she feels better; she doesn't go to Iowa City."

I was no longer allowed to serve myself meals; my mom filled my plate and then politely told me to finish everything. At first, it was awful. Before I ate, my nausea level was at a four. After I ate, it never rose higher than a six. I was expecting a huge increase in nausea after eating a regular serving (not the pathetic servings that I had been eating), but my nausea level only went to a six after eating. It was extremely difficult, though. I wrote "push past the nausea" on my hand to remind myself to give Dr. Di's new plan a chance. I had been on the appetite stimulator for three days when I woke up hungry. It wasn't an extreme hunger, but it made eating a little bit easier. About a week later, I made a life-changing discovery. I still remember sitting at our school room table reading biology. The module was all about the functions of a cell. Any science minded person will tell you that there are a ridiculous amount of functions that a cell can do. I was eating breakfast (I also learned that staying busy and distracted while eating helped) while going to over all of the functions of a cell with my mom. It took at least 45 minutes, and I noticed that I felt different after I finished breakfast 45 minutes later. My nausea level had stayed at four! I tested this new theory for the rest of the day, and each time it worked. By eating slowly, we're talking SUPER slow...like 45-60 minutes for one meal, I was able to keep that nausea level from rising! I felt like I was on top of the world! My grandpa was just as elated. He kept saying, "if that level isn't going up, the only place it has to go is down." I easily got bored just sitting at the table, waiting several minutes, and the taking ONE bite so I did school, knitted, read, and sewed at the dining room table. It was weird, but at this point I didn't care what was considered "normal.". Just three days after I discovered this trick, my nausea level dropped to a three. I was able to eat more AND lower the nausea level at the same time. We joyously canceled the November 7th appointment in Iowa City. My mom wanted to have an appointment there as a back-up so the appointment was rescheduled to November 28. I was so relieved and happy to feel better. As far as pain from my incisions, I was doing great. I was taking less Tylenol, except for when I stretched and laughed at the same time at my friend Elizabeth's birthday party. I pulled my top incision so badly that I thought I had ripped it open. Tylenol and ice helped me get back on track.

I finished October by creating an original Halloween costume: Somebody-Who-Is-Having-Their-Gall-Bladder-Removed. The surgical mask and booties really completed the look!
 I was looking forward to November. I knew that my nausea level would drop to a two, then a one, and then it wouldn't even be there anymore. I looked forward to that first day of having no nausea, but I had no idea what I would have to wait even longer than I expected.