July 2011: The-Girl-Who-Kept-Living

July 2011

That's just how I roll

Finally...the month I had been waiting for had arrived! Everybody who knows me can tell you that I'm a Potterhead. The books were a huge distraction to me while I was sick, and my love for the story and characters grew with each book that I read. Harry Potter and the Deathly Hallows Part Two-the last installment-was coming out on July 15, 2011. I had my ticket for the midnight showing, and I was in the process of making a special t-shirt dedicated to my favorite character, Severus Snape. I sipped on Sierra Mist (something I did daily in an attempt to help my stomach) while working on my t-shirt. Pressing a pillow to my stomach would sometimes help it feel a little bit better, but how was I supposed to press a pillow to my stomach while using fabric paint on a t-shirt? Well, I came up with a genius solution... if I do say so myself. I put a small pillow on my stomach, and then put a wide belt around my waist. I cinched the belt tight enough so that it pressed the pillow to my stomach. Genius, right?! The build-up to the movie began when Harry and the Potters, a two-man band that sings about Harry Potter, came to the library. I went with some friends and we made matching "Dumbledore's Army" t-shirts. I had a blast! I didn't care how my stomach felt: I was dancing and jumping around like an obsessed fan girl at that concert.

 My stomach still wasn't feeling better. I had my first appointment with Dr. C., a pediatric endocrinologist. I was nervous going in to the appointment, but all those nerves faded away when I saw "Entertainment" magazine with Daniel Radcliffe's face on it in the exam room. Dr. C. was tall, thin, old, and nice. Her cell phone, with very current ring tones, rang several times during the appointment, but she seemed very smart. Her theory was either that my thyroid was trying to "self-correct" itself or I was heading toward having a hypo or hyper thyroid. Dr. C. did not think my stomach aches and weight loss were tied to a thyroid problem. My dad has thyroid problems so she thought it could all be genetics. She didn't want to medicate me, but instead she wanted to keep an eye on my levels. Seven blood tests (four vials) were taken and sent to the lab. All my blood work was normal except for my TSH. Dr. C. wasn't worried for the time being. We scheduled another appointment in three months.

Life Goes On
 I celebrated the 4th of July with my family by going to Yankee Doodle Pops-a patriotic concert held by Des Moines' capitol. I ordered green celiac disease awareness bracelets from the Center for Celiac Research for me, my family, and friends. I couldn't help but smile when I saw my parents and siblings all wearing their green "Making Tracks for Celiacs" rubber bracelets. My sister, Rachel, was tested for celiac disease, and her test came back negative. My mom was the only person left to be tested, but she went gluten-free to support me! How sweet! :) My mom and I attended our first celiac support group meeting held at a mega church in West Des Moines. There were lots of samples, a summer themed potluck, and giveaways. It seemed strange to be completely surrounded by food that I could eat!

 On July 8, I had another appointment with my pediatric GI doctor, Dr. D.S. I noticed that each appointment followed the same trend: we would start by discussing things totally unrelated to my stomach. Dr. D.S. asked how my summer was going, what I did for the 4th of July, if I found any new gluten-free foods, etc. Then we would slowly ease our way into talking about my health. Even though I was overflowing with excitement for the new Harry Potter movie, I was still not feeling well. My stomach was constantly upset. I was drinking Sierra Mist (I was bored with Sprite and 7up) every day, but it never worked. I had not lost any weight since I last saw Dr. D.S., and Dr. D.S. said that was a good sign that my villi (what absorbs nutrients and calories in food) might be starting to stand up. I had not been contaminated with gluten since the envelope situation (see "Gluten: Public Enemy #1"). I was adjusting to the taste and texture of gluten-free foods. Gluten-free brownies were unbelievably good! I also enjoyed the GF pizza crust that my mom and I made together every Friday for dinner. I didn't really miss any foods that I couldn't eat anymore; probably because I was never hungry and food didn't really interest me. Dr. D.S. was still concerned about my unending nausea. After performing his usual physical exam while asking about the kids that I babysit, he said that it was time to medicate me. Dr. D.S. said that he wanted to put me on two types of medicine: zantac and amitriptyline.
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Zantac reduces the amount of acid in the stomach.

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.

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"I'm not saying this is all in your head, and you are not going crazy." Dr. D.S. reassured me as he brought up amitriptyline.
The amitripyline would take two weeks to kick in, and I would have to stay on it for six months or else the brain-to-gut connection could break. The only side effect was that it was going to make me sleepy so I would need to take it before bed. Amitripyline can cause heart problems so I would have to have an EKG (electrocardiogram) before starting the medicine. I would also have to have another EKG in one week to make sure the medicine wasn't effecting my heart.
"You're mother is taking extensive notes." Dr. D.S. commented as he saw my mom turn her piece of paper to write on the back after filling up the front. "What do you think?"
I was surprised that he would ask my opinion first. "Umm...yeah, that sounds great!"
I was prescribed zantac and amitripyline, and I would start both that night, permitting the EKG came back normal.
 After our appointment, my mom and I followed the directions given to us by the nurse to the out-patient check-in desk. A nice guy checked me in, gave me a hospital bracelet, and sent us to where the test would take place. A male tech came and took me and my mom into a room with a treadmill (used for other heart tests) and a table for me to lay down on. The tech was really nice; we talked about musical instruments. After telling him that I played the piano, he asked questions about my teacher and what

My heart beat...so cool!

kind of music I liked to play while sticking cold monitor stickers on my chest, stomach, and legs. After typing some things on a computer, the up-and-down images of my heart appeared on the screen. It was so cool to see my own heartbeat! After the test was over, my mom and I quickly drove home for my piano lesson. My piano teacher, Mr. H., is so cool and nice. He had been following my medical journey since I got mono. He told me about the celiac support group and another student that also has celiac disease. He asked good questions and even told me that he was praying for me. He is so great.
 My EKG came back normal so I was going to start amitripyline that night. I was feeling very optimistic about this medicine. There was really no reason why it couldn't work...

Within a few days of starting the amitripyline, I had some weird side effects. I have a low fever and random joint pain. I would be feeling fine until, out of nowhere, my elbow would hurt. It would go away, and then my knee would hurt. All of this was only on the right side of my body. It was the only side effects I had from the medicine. It wasn't making me sleepy like Dr. D.S. said it would. My mom called Dr. D.S.'s office, and he didn't think it was anything to worry about. Although the side effects were annoying, I had bigger and better things to focus on.



  The midnight premiere of the final Harry Potter movie was finally here! My mom and I had been watching all the previous movies to lead up to the finale. I wore my special Snape shirt and drove to the

Severus Snape <3

movie theater with my mom, sister, and my sister's boyfriend. I mingled with other Potterheads in costume until the movie started. It. Was. Incredible! I cried through the last hour when the fight for Hogwarts progressed and beloved characters were lost. I wasn't sitting in a movie theater with a terrible stomach ache and random joint pain when I watched the movie. I was breaking into Gringotts, flying on a dragon, fighting for Hogwarts, and mourning my favorite characters. I had to go back to reality, though. The next day brought the second EKG. I had the same friendly tech, and we chatted about music again. The EKG came back normal. I had been on amitripyline for a week now and there was now improvement-in fact, things had gotten worse. My stomach ache was more extreme. It was so extreme that I had trouble falling asleep. It even woke me up several times during the night. Ten days after I started amitripyline, Dr. D.S. switched me to nortriptyline, another medicine in the same family as amitripyline and used for the same purpose. I was having trouble coping with this new problem now that Harry Potter was over. I still read a chapter or two (or three or four!) in a Harry Potter book each night before bed so I could end the day on a positive note. I honestly believe that reading those books before bed helped me survive.

 As if dealing with severe nausea wasn't enough, I was taking an economics class that I hated. It was long, 12-3, on Monday afternoons and unbearably boring. The class had to watch videos of an annoying econ expert with an accent and the background music was irritating. Everybody else in the class, besides Rachel's boyfriend, was annoying and so were their parents. I didn't feel good, and I did not want to be there.

 One week after starting the nortripyline, my mom called Dr. D.S. with an update. I was not doing well; my stomach felt like it was going to burst. Dr. D.S. had me stop taking the medicine, and he ordered an abdominal ultrasound. His nurse also mentioned that he might want to do another endoscopy. I hit the roof. Absolutely not. There was no way I was going to go through that again. I had no problem with the abdominal ultrasound--I've gone through so many that it was almost easy. When the ultrasound came back normal, Dr. D.S. decided that we would discuss other options at our next appointment, which was five days away. I stopped taking all medicine because it wasn't working. I was dreading the next appointment. I just had a feeling that he would want to do another endoscopy. Even the thought of another scope made me cry.

In the midst of all of the chaos that was the end of July, I have a fantastic memory: my brother, Daniel, was going on a bike ride and asked if I wanted to come. It had been a while since I had biked, and I liked spending time with Daniel, so I enthusiastically said yes. My mom had told Daniel several times that he couldn't go to fast or too far, since I was "fragile". At the beginning of our bike ride, Daniel rode painfully slow and looked over his shoulder almost every minute to check on me. I told him he could speed up so he did, but he asked if I needed to stop several times. My brother has always had the ability to make me laugh hysterically-no matter what I'm going through-and the bike ride was filled with outbursts of laughter. As we traveled along Des Moines' great bike paths, I realized that I had no reason to be terrified of my upcoming appointment with Dr. D.S. All that mattered was that I made a great memory with my brother; one that still sticks out today through the problems of July 2011. Despite that fact that I felt awful, I was still living; I was doing what I wanted to do. It was almost kind of like how Harry Potter still played Quidditch even though Voldemort (excuse me, You-Kn0w-Who) was trying to capture him and ruin his life. Or maybe that's just the Potterhead in me!

TO BE CONTINUED....