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.

 

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....

June 2011: Waiting to Feel Better

June 2011

Babysitting Therapy with my Lucy!

Summer has arrived!! Warm weather, no school, and sleeping in is usually on the agenda for most 15 year olds during the summer. I, however, wanted to stay busy. I had a new schedule of babysitting: Monday nights, Wednesday mornings, and Friday mornings. I was enjoying playing outside and going on little field trips with my two little friends, Lucy and Collin. I loved my summer mornings playing outside, going for walks, reading, and spending time with two great kids. I felt better, physically, mentally, and emotionally, after babysitting. Both kids are hilarious, clever, smart, and sweet. On some days, those random little hugs and kisses made everything seem better. Even though they had no idea what was going on with me, I really believe that my time spent with those kids helped me survive my health nightmare. They gave me something to look forward to and something to get out of bed for. I love you Lucy and Collin! :)

Mr. Collin

 I was going to take the dreaded Driver's Education in June. I would be 16 in August, and I was going to get my license. I was a little worried about Driver's Ed because most of the time I wasn't feeling well enough to drive. My mom helped me overcome this worry by encouraging me, if I felt up to it, to drive wherever we went.

 My health seemed to be improving! I had good days and bad days--I felt hunger pangs for the first time since I got sick in April. My moods and emotions were still mimicking a roller coaster, but I learned to channel those crazy, gluten withdrawal moods by working on a craft project or reading Harry Potter. My mom has June 6, 2011, recorded as a great day for me: my personality was back along with my energy levels, and my stomach wasn't as upset.  My knowledge of gluten-free food and cross contamination was growing. There was a co-op in Iowa City that had a plethora of gluten and dairy free (GF and DF) foods. Meghan, my brother's girlfriend, was nice enough to pick us up foods that we couldn't find in Des Moines. It was like Christmas when Meghan came with her cooler. Tortillas, bread mixes, DF cream cheese, sour cream, yogurt, and cheese galore! I tried eating Greek food at the annual Greek Food Fair, and that resulted in my mom and I trying to communicate to three different Greeks, who were yelling at each other, that I couldn't have a bun on my plate. I was getting used to the taste and texture of gluten-free and dairy-free foods, and I was getting a lot of experience with reading food labels. I was also getting a lot of help with food (and other things) from my grandparents.

Granny & Grandpa:

My mom's parents have been farmers since, well, forever. As I mentioned earlier, my grandpa had a farming accident in 1994 that left him in a wheelchair. He isn't in any old ordinary wheelchair though. A special, state-of-the-art wheelchair was designed that allows my grandpa to travel on gravel roads and farm almost like he did before his accident.

 Grandma and Grandpa, like all grandparents, were concerned about my health. When they learned about my celiac diagnosis, they were armed and ready. They wanted me make sure that I could still come to family holidays and gatherings and eat safely. Grandma got in touch with her sister-in-law, Aunt Connie, who searched Ebay for gluten-free and dairy-free cookbooks. She found an awesome cookbook called "Cooking for Isaiah". It's written by an Italian mom whose son has celiac disease and is also dairy-free. Her cookbook is filled with waffle recipes, bread recipes, a great pizza crust recipe, and lots of desserts. I should note that my grandma and mom both have a strong sweet tooth. They like their desserts, chocolate, brownies, cookies, and any other sweet treat. Grandma loves to cook and feed people so what should she do? Bake me pounds of gluten-free and dairy-free desserts. She would bake enough cookies, cupcakes, chocolate cakes, and other treats to fill four 9x13 Tupperware containers. Her two famous cookies are: peanut butter and jelly cookies and chocolate cookies that have dried cherries in the batter and a cherry in the center. There was no way these delicious cookies could be gluten-free, but they were! Gluten-free mixes are expensive and they don't really taste that good. My mom and I would spend about $100 of gluten-free food a week because of the mixes. Most of our muffins, cakes, breads, and pizza crusts turned out dry. Baking from scratch was difficult and not like "normal" baking, but it was a huge money saver and it tasted WAY better than the mixes.

 While Granny took care of the food aspect of my health, my Grandpa took care of encouraging his "Little Sarah". Grandpa learned how to text, and he got in the habit of texting me every night. It started when the gluten withdrawals started. Grandpa had started calling my mom every day to check on me. My mom told him that I was having a rough time with taking gluten out of my body so Grandpa decided to send me an encouraging text, reminding me that God was always with me. He also liked to send funny jokes via text message. In one text, Grandpa told me that people who don't eat gluten are smarter and more beautiful than people who do eat gluten. He ended his texts by saying: "goodnight sweetheart i love u we we", just like that. "We we" comes from an interesting conversation: when I first started high school (2010) I told my grandpa that I was learning French. He knew "qui" (pronounced "we") in French and asked me one day: "So what does qui qui mean?" I told him that it meant, "yes yes". Well, Grandpa decided that it meant "I love you". You can probably imagine my shock and slight panic attack when I got a text from my grandpa that just said, "we we". It has become our secret code, and I love it!

  One day when the mail arrived, I found a mailing envelope with my name on it. When I looked at the return address, it said: We We. My sweet grandparents had sent me a beautiful necklace with a butterfly charm on it. This poem was engraved on the back of the butterfly: "Just when the caterpillar thought the world was over, she became a butterfly." My grandma had bought found the necklace a long time ago and decided to keep it. She thought that one day some one would need it. :)

The Not-So-Sweet Things:

Every year, a huge homeschooling conference comes to Des Moines. Homeschoolers from all over Iowa and the surrounding states attend the conference to hear speakers and shop for curriculum. Friends of ours, who also homeschool, come every year. While the moms are at the conference, the dads are in charge of all the kids. We've done all sorts of fun things in the past, but I wasn't really looking forward to this year. Although my gluten withdrawal symptoms were getting better, they were still there. I absolutely had to get a good night's rest or else I was a complete wreck the next day. I was also very clingy with my mom. If she was three minutes late picking me up, I would worry that something was wrong. I was used to my mom being with me almost 24/7, and I didn't want to spend the whole weekend away from her. My mom was also worried about leaving me in the care of the dads and siblings for the weekend. My mom was also worried about the food situation. Gluten-free food is expensive enough for one person, and we were going to have nine mouths to feed. All of my food was gluten-free, but the rest of the food on the table wasn't. My mom was terrified that I was going to be cross-contaminated during meal times while she wasn't there. I stood watch in the kitchen and stopped my dad on several occasions from cross-contaminating my food. I eventually stepped in and guarded my food. Everything turned out fine in the end, but it was a weekend that was way more stressful than it should have been.

 Right after this stressful weekend, Driver's Ed started.....and it was awful. I was convinced that I already knew everything there is to know about driving so I didn't see why I had to take the class and do all the homework that followed. Driver's Ed was Monday-Thursday from 8:00-10:30 for 12 days. I drove on Tuesdays and Thursdays from 3-4. The teacher was nice, I actually knew somebody in the class, and I even made a new friend so there were some good parts about Driver's Ed.

 I was learned the hard way that I am severely sensitive to gluten. I had noticed that the smell of bread coming from a Subway or the bread aisle in grocery stores made me feel sick. I felt better if I plugged my nose or over away from the smell. I made the newly-diagnosed mistake of licking an envelope. Some idiot came up with the idea to put gluten in that gross tasting yellow-ish substance on the back of envelopes. I was feeling great until I licked the envelope on that Father's Day card. Within seconds, my stomach felt like it was going to explode. I also had a pounding headache, and I could barely eat anything. This mistake taught me that I really needed to be careful about what I put in my mouth. This discovery lead us to the realization that I was getting cross-contaminated at church whenever there was communion. My gluten-free communion wafers were on a separate plate, but my pastor picked up one of my wafers to give to me after just touching all the regular communion wafers. My mom told Pastor F. about this problem, and we began to train him to give me the plate that held my GF wafers. On several occasions, Pastor F. understandably forget and tried to give me a regular wafer. This became a little joke of ours: I would immediately pull back from the communion rail with a look of disgust on my face. This reminded Pastor F. to give me the special plate. As is custom at our church, we shake hands with the pastor before leaving. Pastor F. often joked about how I would have to wash my hands after shaking his hand that touched the wheat wafers. He also joked about how he had never seen anybody pull away from Christ's body like I did. We had a lot of fun with something that is supposed to be taken seriously. It was great comic relief! :)

As June came to its final two weeks, a lot was happening. Both my brother and dad had been tested for celiac disease as suggested by my GI doctor. Both of their tests came back negative. My mom was so relived. She knew they wouldn't have been able to handle it. Daniel made me laugh until I cried (something that had not happened for a very long time) when he said that his "entire social life would be ruined" if he had celiac disease and had to watch what and where he ate.

 I had my first appointment with Dr. D.S. after being diagnosed with celiac disease. Even though June had started off great, it wasn't ending great. I was still battling a constant upset stomach every day. My mom was doing everything she could to get gluten out of the house. She even bought a new cutting board and colander. Dr. D.S. was very concerned about my weight loss (I had lost 20 pounds by this point) and that I wasn't feeling better. He ordered two blood tests: a tTG (tissue transglutaminase antibody) that would show how much gluten was in my blood. He also ordered some thyroid tests. The thyroid is a gland in the throat that controls hormones. A connection between celiac disease and thyroid problems is very common. Dr. D.S. thought that my thyroid might be preventing me from feeling better or it was going to take a while for me to get the gluten out of my body, especially since I was so sensitive. Dr. D.S. wanted to see me again in one month, "but if you're not happy, come back in two weeks." He said to my mom. Since the DF (dairy-free) diet didn't appear to be working, Dr. D.S. said that I could go back on dairy!! I was so excited. Bring on the milk, real cheese, Ranch dressing, Nutella, and all other dairy products! 

 The tests came back showing that my thyroid was off. An appointment was made with a pediatric endocrinologist--a doctor who specializes in the endocrine (glands) system. My tTG came back great: my tTG before I went gluten-free was 22. Celiac patients need anything less than a 4, and my level came back at a whopping 1.2!! Gluten wasn't the obvious problem anymore so maybe it was my thyroid. I wasn't super thrilled about going to see another new and strange doctor, but I was thrilled about June finally being over. I could eat all the dairy I wanted, my gluten withdrawal symptoms were fading away, and I passed Driver's Ed with 95%!

TO BE CONTINUED!!!

I look so sick in this picture, but I love this shirt!