Singing with Diana & Joanna! |
April 1, 2011, brought the exciting arrival of our former neighbors from Michigan. The L. Family was visiting their grandparents who live next to us. My sister and I grew up with the L. Family's two daughters, Diana and Joanna, who are about the same age as us. It was great to see them again, and all the girls had a blast getting caught up. The L. Family came on a Friday and planned to leave the following Tuesday. The weekend was full of hanging out, talking, laughing, and eating. Ethnic food was on the menu several times, and the women of the L. Family know how to cook! Delicious feasts of pot stickers, fried rice, and other Chinese foods were prepared. It was all so yummy! My stomach didn't agree with most of the foods, but once again I blamed the salt from soy sauce as the cause. I pushed past my stomach ache and enjoyed watching the Harry Potter movies with Diana and Joanna. We also recorded ourselves singing an over-the-top version of Katy Perry's song, Firework. I still have the video on my iPod, and it always makes me laugh until I cry when I watch it. My mom treated Diana, Joanna, and myself to an afternoon showing of the movie Rango. We were the only ones in the theater so we laughed and talked as loudly as we wanted. I had fun, but I was feeling awful. My stomach was so upset, and I felt exhausted. Dinner that night consisted of another Chinese meal that didn't sit well. I hardly touched any of my food. I babysat that night, and my stomach felt just as upset as it did when I had c.diff. I was too tired to think of what the problem was this time. I had a suspicion that it wasn't just the spices in the food.
The next morning was April 5, and I woke up thinking about a lot of things. Today my brother, Daniel, turned 22 years old. I should remember to text him. The L Family was leaving today. I'm going to miss them. I've had so much fun with the girls. As I sat up in my bed, I reached across my bed to pet my cat, Oliver. I had just started petting him when a horrible sensation came over me. I had experienced this before, and I knew what was coming. I quickly got out of bed (which startled the still-sleepy Oliver) and raced to the bathroom. October, 2010, repeated itself again. Even though I hadn't been eating much, a whole lot of something came out of me all at once. I couldn't believe. I just knew I had a c.diff relapse. When my business in the bathroom was finished, I went back to my bed and laid down next to Oliver. I considered facing the facts of c.diff again, and it was too much to handle. I started to cry as Oliver started to purr. My mom came upstairs to get ready for the day and was surprised to see me crying. I told her what happened, and that I knew I had a c.diff relapse. My mom immediately jumped into mom mode and calmed me down. She decided to do some research while I rested on the couch while doing some easier school subjects. The more I thought about it, the more I was convinced I had c.diff again. After my mom finished her research, she informed me that c.diff usually relapses two months after a person is first exposed to it.
"That means you have the flu." My mom said confidently."Not if I was exposed to c.diff again." I added.
I can still remember my mom's eyes growing wider when I brought up this point. We decided to wait and see what the next couple days brought before we freaked out. I had already diagnosed myself with c.diff. I knew right then and there that I was done volunteering. I would miss spending time with my volunteering partner, J, but I was not going to put up with that hospital's sloppy germ control skills. There was a very weird factor in all of this: when I got c.diff in October, I volunteered on a Thursday and woke up with diarrhea on a Tuesday. This time I volunteered on a Thursday, and woke up with diarrhea on a Tuesday. Was it a creepy coincidence or was the time frame for c.diff symptoms to show up five days?
Flowers from Jonathan |
The next few days brought more diarrhea and a loss of appetite. I was back on my diet of 7up, grilled cheese, quesdillas, instant potatoes, pudding, and other bland foods. I could not believe it. I was so close to reaching my pre-sick weight, and now I was going to lose more weight. I had an appointment for my next (it was also supposed to be my last) weight check at Dr. S.'s office on April 7. We called to ask if we could see Dr. S. while we were there. I clearly didn't have the flu so that meant there was only one other thing it could be: c.diff. You've probably heard of the phrase, "to know when you're beaten". Well, I was beaten. I was dreading my appointment with Dr. S. I had visions of myself breaking down and crying right there in the mustard yellow exam room. My sister, Rachel, and her boyfriend, Jonathan, had both texted me the day of the appointment. I was obviously run down and hopeless. Sweet Jonathan brought me yummy chocolate chip cookies and flowers. Rachel got a good one! :P
I walked in to Dr. S.'s office with my mom as ready as I was ever going to be. The shock of getting sick again had worn off, and now it was time to face the truth. We had to wait almost an hour to see Dr. S. He ordered some blood tests (including a test for celiac pronounced "seal-e-yack") disease-the disease where you can't eat any wheat), a urine sample, and a stool sample. The blood and urine came back normal so all that was left was that lovely stool sample that could determine 15 more days on metronidazole, an awful taste in my mouth, and more havoc on my already fragile stomach.
"We'll see what the stool sample says and then see if you need to take that great tasting medicine again!" Dr. S. cheerfully said. It was impossible to be in a bad mood around him! Dr. S. also suggested that we make another appointment to see the same pediatric gastroenterologist that I was supposed to see in January. Dr. S. said there were often waiting lists for these kinds of specialists. An appointment was made to see Dr. D.S. on April 29.
Art class fun with T. |
Within the next couple days, the sample was shipped off to the lab. To be myself busy, I had a sleepover with Rachel at her college dorm. We had a blast! I experienced cafeteria food (everything was so salty), watched MTV, and stayed up late. I had so much fun that I forgot about my stomach troubles for a while. I also distracted myself by attending an art class that was open for high schoolers in our home schooling group. I had been messaging my best friends, Elizabeth and T., on Facebook and telling them about my latest stomach problems. They were sympathetic and told me that they were praying for me. Both girls were surprised and happy to see me at art class. All the students had to participate in gym class, and gym usually involved some amount of running. I didn't feel up to running so I walked behind everybody else. T. was nice enough to walk with me. I skipped gym for the rest of the class and helped another teacher manage her pupils. T. also accompanied me so I wouldn't be the only person skipping gym class.
About one week after my appointment with Dr. S., the results from the stool sample. My heart was racing as I tried to listen in on my mom's conversation with Dr. S.'s nurse, Nurse T. After my mom got off the phone, she had good news and bad news. The good news was that I did not have celiac disease! I then braced myself for the bad news that I had c.diff. I would never have expected the news: the lab refused to check for c.diff. My sample was not in diarrhea form, and the lab had changed their protocol since last November. All stool being checked for c.diff had to be in diarrhea form. I was so mad! Was I just supposed to let the c.diff toxins build up in my body? I was learning about bacteria in biology at the time, and I knew enough to be terrified of the possible bacteria that was in my body. There was absolutely nothing we could do. I wanted to sue the lab for changing their protocol and not telling Dr. S. My mom was also mad and called my grandpa to tell him. My grandpa had taken an interest in my recurrent stomach problems. Both him and my grandma were concerned. I told Elizabeth and T. about the stupid lab, and they were both mad. I wrote that I was ready for all of this to be over, and Elizabeth told me that she was ready for it to be over also. T. said that she was getting frustrated by just reading my messages. I could tell they were both getting worried. Nurse T. suggested we submit another stool sample and see if the lab would test for c.diff. We had no luck. The strange thing was, three other stool samples were submitted to be tests for c.diff, and those samples were not in proper form so they were not tested. At least I wasn't alone.
I tried to stay busy as I waited to see the stomach doctor on April 29. I was still convinced that I had c.diff. I didn't know what else could be wrong. I had a gut feeling (no pun intended!) that whatever the problem was, it was going to take a while to fix it.Watching the Royal Wedding at 3:00 am! |
As much as I was dreading April 29, I found myself looking forward to it for other reasons. The Royal Wedding of Prince William to Kate Middleton was on that same day! I made plans to get up at 3:00 a.m. to watch the wedding live from London. My mom and Rachel were going to join me, and we made tea and scones. I have always been interested in all things British. My grandma is also interested in the monarchy, and my dad's mom (she passed away before I was born) was also interested in the monarchy. I'm not sure how I came to like England, but I always have and I am British at heart!
The Royal Wedding was beautiful; well worth getting up so early! Kate looked so beautiful. I forgot about seeing a stomach doctor as I sipped my tea, nibbled on my scone, and gawked at all those British hats. After the wedding was over, I got ready to see Dr. D.S. Erika, the mom whose kids I watch twice a week, called me to wish me good luck at my appointment and that she was praying for me. Erika had seen me go through mono and c.diff, and she is naturally so caring and kind.
I didn't know what to expect as I walked into the hospital where Dr. D.S.'s office was. His office was located in the same hospital where I used to volunteer. My mom had e-mailed the volunteer coordinator telling her that I was being tested for c.diff again and that I was not going to volunteer anymore. I was so worried about running into somebody who I used to work with at the hospital. My mom checked me in with a nice receptionist, and we filled out some paperwork. Shortly, a nurse called me back and took my vials. The office was very small and seemed crowded. The exam room looked like a regular exam room in a doctor's office. After waiting for a little bit, there was a knock at the door and the pediatric gastroenterologist came in. He was a very, very short man probably in his 50's. He had gray hair but not a lot of it. He introduced himself and then told me to sit on a chair by my mom. He asked a lot of questions. Some questions made sense and others did not. No, I've never tried to lose weight. No, I've never been on a diet. No, I don't think I'm a high maintenance. That was seriously one of the questions he asked. What do I want to weigh? I don't know! Whatever is average. Are you seriously asking how many times a day I go to the bathroom?! Who keeps track of that stuff? Ugh, this is so embarrassing. I want to leave. I wasn't sure if I liked Dr. D.S. or not. He seemed quirky but nice. The physical exam he performed still confuses me. In addition to the regular physical exam, he also took a really good look at my feet and hands. Yes, feet and hands. While he commented on my toenail and fingernail polish, I was silently wondering why I even bothered coming to this appointment. Dr. D.S. asked me to lay down on my back while he felt my stomach. He then started tapping on my stomach while asking if I liked being tall. I told him that I didn't like it. He then launched into a story about a girl from China who was very tall, and she had surgery to cut out parts of her legs so she would be shorter. When she woke up the next morning, her arms drug on the ground! I politely laughed. Dr. D.S. immediately switched gears told me this: "I think you have celiac disease." I almost laughed out loud. Here we have this slightly bizarre stomach doctor, who looks at feet and tells stories that are probably made up, telling me that I have a disease that I had already been tested for...twice!
"I've already been tested for that!" I protested.
Dr. D.S. nodded and asked me to sit down again next to my mom. He then explained that the blood test for celiac disease had five panels. In my case, only two panels were elevated. Dr. D.S. told us that if even one panel was elevated, there was a 97% chance of having celiac disease. All my symptoms pointed to celiac disease. I was trying my hardest to block out what he was saying. This could not be happening to me. Unfortunately, things got worse. The only way to confirm that I had celiac disease was to do an endoscopy. I didn't know what that was so Dr. D.S. told me that a small camera on the end of a flexible tube was going to be stuck down my throat and into my stomach and the first part of my small intestine. I would have medicine through an IV that would cause me to fall asleep and not remember anything. Some biopsies of my esophagus, stomach, and duodenum (the first part of my small intestine) would be taken and sent away for testing. Dr. D.S. said that the only treatment for celiac disease was a diet that was free of something called gluten--wheat, rye, and barley--for life. Also, my parents and siblings would need to be tested for celiac disease due to a 20% chance of them also having it. My head was spinning. There were so many things to absorb and think about. When Dr. D.S. left the room, I burst into tears. I was absolutely terrified. I didn't like or trust the doctor, I wasn't comfortable with a tube being shoved down my throat, and I hated the fact that I might never be able to eat wheat ever again. A nurse came in and scheduled my endoscopy for May 2. On the way home, my mom called my grandpa and dad to tell them about the appointment. I sat in the passenger seat and thought about never eating cake, cookies, brownies, Papa Murphy's pizza, bagels, and Applebees ever again. I thought about going on a vacation, going to college, and going to my aunt's house. Could I just pick the bun off the hamburger? What was I supposed to eat? When we got home, my mom told me that she had decided that the whole family would go gluten-free. I told her they didn't have to do that for me, but my mom was firm on her decision. If I couldn't eat it, then nobody else could. I was upset and down in the dumps when I got home. I couldn't bare to think of what was ahead of me. My mom felt like she was poisoning me at every meal because there was wheat in everything we ate. As much as I tried to convince myself that the stomach doctor was wrong, I had a feeling that he was right. Dr. D.S. was recommended by Dr. S., the doctor who was never been wrong. I knew Dr. D.S. had to be a really good doctor if Dr. S. suggested I see him.
I had three days to prepare for the endoscopy and the results that would follow it. I received a lot of support and prayers from my dear friends, Elizabeth and T. Elizabeth told me that a lot of people on her mom's side of the family have celiac disease. My mom found a box of gluten-free communion wafers at church, and we went to our local Hy-Vee grocery store to check out their gluten-free section. I desperately wanted to feel better, but I did not want to give up gluten.
TO BE CONTINUED!