Eight Months Later

September 2012: Moving On

Celiac disease awareness walk

Autumn had officially arrived in Iowa. The leaves were changing colors and all things pumpkin and apple scented were hot buys. I was still feeling great! I had stopped the visceral massage therapy due to the therapist telling me that my bowel troubles were because of "thoughts that I needed to let go of". Needless to say, I never saw her again. Exciting events were happening in my family: my brother proposed to his longtime girlfriend! We were all thrilled to have a new member of the family.
 The one year anniversary of my gall bladder surgery passed on September 23. It was funny to think of living 365 days without one of my organs, but I was very thankful about that! Another sign that I was healthy was walking in a 5k! I discovered a celiac disease awareness walk in Kansas City, and my family and I went. It was so much fun! I dreamed of Des Moines having a celiac walk after I was diagnosed, but it took so much effort to plan! *side note: my mom and I co-coordinated a very successful celiac disease awareness walk in October of 2013 in Des Moines!* I was proud of myself for being able to walk 3.2 miles. Maybe I was in better shape than I thought!

October 2012: Stronger

Race for the Cure

October brought my future sister-in-law asking me to be a bridesmaid in their wedding! I had never been in a wedding before so I was very excited. I also had a small experiment going on with my diet. I noticed that my stomach was upset whenever I ate any type of sweet--cookies, cupcakes, cake, pie, etc.--so I cut out most sweets and felt tremendously better.
 After two years of sitting out, I was finally able to participate in Race for the Cure! I decked out in all pink and walked the 3.2 mile course with my mom and sister. It was cold, but we had fun anyways. That night was Reggie's Sleepout, a night where people slept in tents in a football stadium to benefit homeless people. It was like 26 degrees or something horrid like that, so I bundled up in multiple layers. I wouldn't say that I enjoyed the event, but I'm glad I was able to do it once in my life.

November 2012: A Very Thankful Thanksgiving

Thanksgiving

I don't think I had ever been as thankful as I was this year. I was making enormous strides with my health. I started a very simple workout routine consisting of floor strengthening exercises, and I could tell that I was making great progress. I always enjoyed fitness before I got sick and it was a goal of mine to eventually start running, but I had to reach my goal weight first. Even though I was feeling healthy, I wasn't at a healthy weight. Anyways, I was able to do everything that I wanted to do when I was sick. I was working and babysitting, driving everywhere, hanging out with friends, exercising, and actually having a life. At Thanksgiving, I was so thankful for my family, friends, doctors, nurses, medicines, and everything else that got me to this point.

December 2012: Where My Demons Hide

Brother Bear's graduation

I am a Christmas fanatic so I usually enjoy the month of December. Even though I was looking forward to Christmas, there were two big obstacles in this month. The first of which was my brother's college graduation. Of course, I was very proud of my brother for earning his degree but unfortunately, his graduation took place in Iowa City. I had struggled with flashbacks and bad memories about going to Dr. Satan in Iowa City and everything that happened after for almost an entire year. How was I supposed to go back?! I knew that I wasn't going to the hospital; I was going to celebrate my brother graduation. I also knew that being back in that city would wreck havoc inside me. Leading up to graduation weekend, I was felt sick with anxiety. I had been around Iowa City numerous times when my brother was a student at the university so I knew how the city was set up. I listened to the song "Titanium" while driving through the city to help calm my nerves. I was very tense and alert for the whole weekend. I constantly looked over my shoulder and around me. My heart skipped a beat every time I saw an older man. The scariest moment of all came when we were leaving the graduation ceremony. I immediately recognized the hospital parking ramp and the entrance that I used when I went there. It didn't take long before I started shaking, my heart raced rapidly, and I broke out in a cold sweat. I tried to console myself by looking through pictures on my iPod of Cookie Delivery Day and of my doctors and heroes, but it didn't stop the traumatic feelings and emotions from playing through my head. As much as I love spending time with my brother, I couldn't wait to be back in Des Moines.
 The next obstacle hit right after Christmas. I had recently befriended the daughter of a church member. Beth was her name, and she had severe gastroparesis; her stomach literally did not move. She "ate" by feeding tubes and threw up whenever she ate anything. My gastroparesis is not as severe as Beth's, but we were able to bond through our common struggles. Beth was a 24 year old fighter. She was feisty, spoke everything that was on her mind, and didn't care who heard it. Her doctors in Des Moines had given up, but I knew that her attitude would pull her through. She was scheduled to have a gastric pacemaker placed in February. On Christmas Eve, we exchanged gifts and made plans to go out for lunch sometime. On December 27, Beth text me saying that she was in the ER due to dehydration and pain on the left side of her body. She wanted me to come and visit her the next day. The texts that I received from Beth didn't make much sense, but I figured that she was just distracted. I text her in the afternoon on December 28, and I thought it was strange that she didn't instantly reply like she always did. I was at the movie theater, seeing The Hobbit with my mom and sister. When we left the theater, there was a text on my mom's phone from my dad, telling her to call him. My sister and I were talking about the movie when my mom suddenly burst out, "WHAT?!" while talking to my dad. She broke into tears, which she rarely does, so I knew something was very wrong. My first thought was that something had happened to my grandparents. My mom got off the phone with my dad and said, "Oh Sarah, I'm so sorry." My instinct told me that my beloved cat, Oliver, had escaped or died.

The bracelet Beth gave me
and a gastroparesis
awareness bracelet

"Beth died." When my mom first told me this, I was in complete doubt. No, that's not possible. I'm going to text her and ask if she died. Of course, that would make no sense but it shows how doubtful I was. As my mom passed on the minor details from my dad, I felt like a heavy weight was slowly pressing down on me. I would never get a "hey hunny! how you feeling?" text from her. We would never have lunch together. I would never go over to her house and play with her adorable daughters. I would never be able to show her the manicure that I got with her gift certificate she gave me for Christmas. I was unable to move for the rest of the car ride. At home, I stood in the snowy driveway until my mom had to move me inside. I finally broke down sobbing. How did the girl I gave a present to on Christmas Eve be dead four days later? Somehow my brother had found out the news and called me right away. Moving on from this obstacle was very difficult and writing about it has been just as hard as writing about what happened in Iowa City. The year had came in like a lion and seemed to be leaving just as bad. Beth's funeral gave me comfort; our pastor talked about how Beth won the battle. She was no longer suffering every single day like she was on earth. It made me smile to think of Beth marching around Heaven telling everybody what was on her mind. I got the manicure she gave me for Christmas the day before her funeral, and I chose purple nail polish in honor of Beth's favorite color. I still wear the beautiful friendship bracelet she gave me about a month before she died, and I see her mother and daughter regularly at church. Beth's daughter is a spitting image of herself, both in looks and attitude! I always smile when I see her daughter march up the aisle to the front of the church for the kids' sermon, and I know Beth is doing the same thing in Heaven.

January 2013: A New Beginning

New Year's Day is always a day to wipe away the bad from the last year and welcome new thoughts of a great new year. 2012 definitely had its bad and good moments. It was hard to move on from Beth's death, but I found myself feeling physically sick whenever I thought of her and the things we never accomplished. I knew that Beth would not want me to not feel well because of thoughts about her, but I was down in the dumps for a while. A follow up with my pediatric GI doctor, Dr. Di, helped cheer me up. The receptionist greeted me with a cheerful smile, and Nurse J. was happy to see him. He had just returned from a vacation in South America and picked up a pin from Lima, Peru for me! Both Nurse J. and Dr. Di were glad to see that I was still feeling great AND that I had brought homemade candy for them. I was still walking on my NordicTrack after eating, and it was getting really old. I discovered that if I didn't eat meat, I didn't have to NordicTrack. I experimented for a few days and confirmed my hypothesis. I officially went vegetarian! I had always been interested in a vegetarian lifestyle, mainly because I love animals so much, and now I was able to try it. I found that I didn't miss meat at all!
 The first anniversary of my appointment with Dr. Satan came on January 23. I surprised my mom with flowers and drinks from Caribou Coffee as a way to make nice memories on what will forever be a very bad day.

February 2013: Sharing My Story

Ever since I had started feeling better, I had this desire to share my health story with the public. I had no idea how I would do that though. A friend of mine had just started blogging and that gave me an idea: maybe I should blog about my health journey. I didn't know if anyone would even be interested, but I figured it was worth a try. I have absolutely loved blogging, and I'm pleased to say that people are actually interested in my story!

Celebrating!

March 2013: A Lot Can Happen In One Year

March was an exciting month. At the beginning of March, I attended a special day at Iowa State University for students wanting to go into food science or human nutrition majors. It was very interesting, and it made me even more confident about going to ISU and becoming a dietitian.
The middle of March brought spring break. As you might remember from last spring break, I ended up in the hospital. Spring break of 2013 was completely different. I worked over 40 hours at both my daycare job and babysitting Lucy and Collin. I was completely exhausted by the time Friday of spring break came, but it was a good kind of tired. On the first anniversary of me being hospitalized, my mom and I went to the coffee shop at the hospital to celebrate how far I had come in a year.
The end of March finished up a great month with a great event: I hit my goal weight! That meant that I could start jogging again. I had been dreaming (and saving money) about a wild pair of Asics running shoes, and now I could finally get them!

April 2013: You Never Know How Strong You Are....

I bought my dream running shoes on April 1, and started using them the next day. I was going to do the Couch 2 5k program, which I would highly recommend to anyone who wants to get started running. I'll never forget my first one-minute run; it was a scene straight out of Chariots of Fire! I enjoyed running three times a week in my new shoes and workout clothes. Running was the last item to be crossed off my wellness bucket list.

My dream running shoes: Asics Gel
Nossa Tri 8

 I woke up one morning, April 12 to be exact, feeling completely normal. I sat down for breakfast, which I oddly remember was a yogurt and granola parfait, and took three bites. BAM. Instant stomach pain. BAM. Extreme fullness. I tried to stay calm as I assessed the situation. Was the yogurt dairy-free? Yes. Was the granola gluten-free and honey-free? Yes. Was I constipated? No. Had I taken my medicine the night before? Yes. I knew I couldn't stop at just three bites so I forced the rest of my breakfast down. When I say forced, I mean it. I had that after-Thanksgiving-meal-where-you're-so-full-you-can't-move-and-think-you're-going-to-burst feeling. What was going on? I told my mom about this, and we decided to increase my Miralax since constipation could cause problems like this. I tried to not worry, but I had never experienced this feeling before. What could possibly be wrong now?

TO BE CONTINUED.......

"You can go the distance/you can run the mile/you can walk straight through hell with a smile"

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!