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..............