The "Something Else"

June 2013

Clean out day :(

I hoped and prayed that something, anything, would change or improve so I wouldn't have to have my third endoscopy and second colonoscopy on June 6. My stomach refused to comply with this idea. There were events to keep my mind busy however. My mom and I made mints and table favors with my future sister-in-law for their upcoming wedding, and we also hosted and attended bridal showers. June 4 was my last day of freedom before the following clean out and scope. I met up with a friend of mine who was moving to California at Starbucks. I ordered a Grande Frappuccino as a treat for myself since I knew what to expect for the next two days. I wasn't able to eat any solids on June 5 so I started the day with a popsicle. The "dirty", as Dr. Di put it, clean out started at noon with a magnesium citrate. I downed it in my usual time of 30 minutes while watching a show on PBS about England. I switched back and forth from jello to popsicles for the rest of the day, and I drank the second magnesium citrate at 4:00. The second bottle was much harder to get down than the first and took me a long time. I felt so nauseous and exhausted. I camped out on the couch with my cat and the TV remote for the entire day. A surprise came from my grandparents in the afternoon: a bouquet of flowers and an adorable stuffed lion. My grandparents stayed completely up to date with my medical problems, and my mom talked to my grandpa every day to update him about me. I went to bed early that night, mainly because I had to get up early the next day, but also because the clean out had completely exhausted me. I was so down in the dumps. How did I make it back to this? My last scope was in August of 2011; almost two years ago. What could possibly be wrong?
 I had to be at the hospital at 7am on the day of the scope, June 6. There was some extreme deja vu going on as my mom and I walked into the hospital and to the endoscopy floor. Last time, I was so dehydrated that I could barely move, but I didn't feel that way this time. A big male nurse called me from the waiting room and took me back to the prep area. Since I was so out-of-it last time, it was a like a whole new world! I changed into the very flattering hospital gown and socks before the nurse came in. She had the sweetest voice I've ever heard! She was very quite and mild with a soft and squeaky voice to match. She almost made the experience pleasant! After she left, I read my current British book until Dr. Di came in. My parents signed consent forms, we went over the procedure, and Dr. Di said that if the scope came back normal he would try to get me in to see an adult GI even though my 18th birthday was over two months away. The thought of that made me pray even harder that there would be something visibly wrong. That's such an odd thing to pray for, but when you are in a situation like mine, you find yourself praying for a problem that can be resolved. After Dr. Di left, Nurse T. surprised me with a visit! It was so great to see her; she completely put me at ease. Soon it was time to start the IV so I could be taken back to the procedure room. I kept myself from rolling my eyes when the child life specialist came in and talked to me like I was 10. I knew the IV would be hard to get in because I was dehydrated, and I was right. After two nurses and three tries, an IV was finally started. While the nurses were trying, the anesthesiologist came in to go over the basics of being put under. I hugged my mom goodbye before walking with a nurse down the hallway and around a corner. I saw a huge white board (just like on Grey's Anatomy) stating which doctor was in which room. This procedure room was different from the room I was in last time. It was small, dark, and very crowded. Nurse J., Dr. Di's male nurse, was drinking coffee and greeted me with a friendly hello and asked how I was.
"Well....I'm here."
Nurse J. apologized for drinking coffee since it was "unprofessional". I told him that it smelled so good and I was thirsty. I laid down on the table while the nurses put heart monitor stickers on me. I heard the anesthesiologist (who was behind my head) ask Dr. Di how he wants his teens during scopes. Dr. Di replied that I should be kept still and calm.
"And asleep." I added, which drew laughs from everybody.
"Good for you; voicing your own opinion!" The nurse who was standing next to me said. "You look familiar. Have we scoped you before?"
I was impressed that she was able to recognize me after almost two years. She had me breathe in oxygen before the "magic medicine" was going to be put in through the IV. It might sting and I would probably feel "floaty". Shortly after she said that, my fingers started to tingle and my cheeks stung and itched. I briefly felt nervous, but I reminded myself that as soon as I fell asleep I would wake up again. That's one of the blessings from being put under so many times: I knew what to expect. My face felt hot and then the floaty feeling came.

About 45 minutes later, Dr. Di met my parents in the waiting room while I was taken to recovery. I faintly remember asking the nurse where my mom was before falling back asleep. I remember opening my eyes and seeing my mom. I was very teary and confused. Ultimately, I was dying to know what, if anything, was wrong, but I couldn't think straight enough to come up with the words to ask. I got very upset about the automatic blood pressure cuff that was squeezing my arm and the oxygen clip on my finger.
"It's bugging me." I said as I took the clip off my finger. The nurse gently moved it to a different finger which satisfied me. When I was more awake, I asked my mom what they found. I still clearly remember my mom saying: "your stomach is inflamed and there is bile in your stomach." I was so relieved that I fell back asleep. The next time I woke up, I asked for something to drink. The nurse brought me a juice box. Even though I still had a decent amount of anesthesia in my body, I still searched the juice box for a label to read.
"Sarah....it's gluten-free." My mom told me.
I slept on and off for about a hour before the nurse wanted me to start sitting up. I was curious to see the pictures of my inflamed stomach, and I was taken back at how red and inflamed the inside of my stomach looked. It was also weird to see green liquid (bile) in my stomach as well..  I added a fourth digestive disorder to my list: gastritis

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Gastritis: Gastritis occurs when the lining of the stomach becomes inflamed or swollen.
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 I didn't feel completely awake, but I was cleared to go home anyways. My mom left to get the car while I was wheeled outside. I slept the whole way home, and when I got home I went up to my bedroom where my cat was more than willing to comfort me by purring and sleeping as close to me as possible. I rested for most of the day, but I was so touched when flowers came from my brother and future sister-in-law.

Beautiful flowers from
my brother and his fiancée

  My mom informed me that Dr. Di prescribed Nexium, the purple pill, for the inflammation in my stomach. The bile had leaked into my stomach because I don't have a gall bladder. Dr. Di wanted to give the Nexium a chance to work before starting anything for the bile.
At the end of the day, I was exhausted but thankful. There was a problem that could be fixed. If you remember from the previous post, both Dr. El and Dr. Di had guessed that I had gastritis. An inflamed stomach completely explained the early feelings of being full and the stomach pain that was so bad I could hardly stand up straight.

I had been on Nexium for a few days when I started to see it actually working. I only noticed a very small difference in how I felt, but it was better than nothing. In the meantime, I continued to work, run, and prepare for my role as a bridesmaid in my brother's upcoming wedding. This brings me to some much needed comic relief: I had been using a daily tanning lotion so I wouldn't look like a vampire in my bridesmaid dress. I was getting dressed one day when I noticed something strange. There were three round circle shapes on my chest that weren't tan. I couldn't figure out what it was but it finally hit me: the heart monitors that were stuck to my chest during the scope had taken off my tanning lotion! I started applying extra lotion to those areas so it wouldn't be visibly noticeable that I had been put under about a month before the wedding!
 As time moved on, I still didn't feel consistently well. My mom called Nurse J., who gave a full report to Dr. Di. A medicine was prescribed, and this medicine was called cholestryamine:
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Cholestryamine: an oral drug used for many reasons, one of which is to bind up any excess bile in the stomach.
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In addition to having nasty sounding side effects (constipation and abdominal distension anyone?), this medicine was what I would call high maintenance. It had to be taken three hours before any other medicine and no more than one hour after other medicine. This wouldn't be such a problem if I wasn't on so many medicines! I was still taking amitriptyline and Nexium in addition to a vitamin, probiotic, Miralax, occasional Tylenol, and peppermint oil capsules. All of those counted as medicines. My mom came up with a medicine schedule that we sat down and planned every single day. That isn't the end of this high maintenance medicine though. It was a powder that I mixed with three ounces of water twice a day. The powder was bright orange and smelled like orange juice. It kind of tasted like Sunny D, only not as good. I also had to brush my teeth really well after I drank it because it would coat my teeth and could cause potential tooth decay. Sounds great right?! With all the effort and planning this medicine took, it had better work.
 I actually did feel better within a few days! I could never feel well consistently though. I was, however, very proud of myself for graduating from the Couch 2 5k running program! By the end of June, I could run three miles. I was so thankful that this latest round of bad health didn't prevent me from running. I felt like I was fighting my stomach back whenever I ran!

July 2013

On July 1 I had a follow up appointment with Dr. Di. I still wasn't consistently feeling better. My mom looked back through my medical history file on our computer and noticed that at the end of last summer (when I felt 100% better), I had just gotten off prescription prevacid (aka lansoprazole). Lansoprazole is in the same family as other medicines that shut off pumps in the stomach that produce acid. If it worked last year, why wouldn't it work again? Dr. Di agreed to try the prevacid, along with increasing the cholestryamine to three times a day. While doing his usual physical exam, Dr. Di felt something different in my stomach. He thought it was probably a muscle (abs of steel!!) or maybe my spine, but he wanted me to have an ultrasound just in case. It was almost sad how routine and normal the ultrasound was. Of course, it came back normal.
 As my brother's wedding drew closer, I started to get nervous. I desperately wanted to feel better for the wedding. I wanted to look like a healthy bridesmaid, dance the night away at the reception, and have a great report for all the out-of-state relatives who would be there and undoubtedly ask how I was feeling. Thankfully, as the week of the wedding came around, I did start to feel a little bit better. I noticed that my stomach would really start to hurt, that gastritis pain, about 30 minutes before the next dose of cholestryamine was due. After I drank my medicine, my stomach would feel better. I began to look at cholestryamine as a friend, not a terrible side effect causing medicine that tasted gross.

Wedding time!

The weekend of my brother's wedding came quickly. It was so great to see my dad's siblings and cousins again AND to tell them that I was feeling better. I was able to dance with everybody else for the entire reception, something that I love to do at weddings! My stomach felt great, but that was probably due to the fact that I hadn't had much to eat that day. The day after the wedding, when I actually had time to eat, my stomach returned to its usual fullness and pain mode.
 The rest of July was filled with working, running, and enjoying what was left of summer. I registered to take a math class at our community college, as prep for college, during my senior year of high school, and I wondered if I would still not feel well when it started.

August 2013

At the beginning of August, I noticed an interesting trend. On days when I worked a morning shift at the daycare, I got up at 6:00 in the morning. I had to take my cholestryamine after I woke up and one hour after taking my other medicines. I set my alarm to take my prevacid, probiotic, and peppermint oil capsule at 5:20 a.m. so I could take the cholestryamine at 6:20 before I left for work. On days when I didn't have to work the morning shift, I didn't set an alarm to take my medicine at 5:20. On days when I didn't do this, I didn't feel well. On days when I took my pills at 5:20, I felt pretty good. I like to think that God caused me to realize this because I had a dream where I took my pills at 5:20 when in reality I didn't. Maybe my body was so used to receiving the pills at 5:20 that I dreamt about it. With this being said, I will remind you what prevacid does: prevacid shuts off the pumps in the stomach that produce acid. When I took prevacid at 5:20, those pumps were shut off and stomach acid wasn't irritating the gastritis. However, when I didn't take prevacid at 5:20, the pumps were shut off at whatever time I took it. I decided to always set my alarm for 5:20, regardless of what time I actually had to get up, to see if that helped. It did! Still to this day, I take my prevacid at 5:20 in the morning. After realizing that prevacid had to be taken at the same time every day, it made me wonder if taking the cholestryamine at the same time would have the same effect. I created a schedule and strictly followed it. It worked wonders!


The master schedule

 I had read something on Pinterest about chamomile tea being good for healing inflammation. I started drinking a cup of chamomile tea (with some milk because chamomile tea by itself tastes like straw!) every morning. It helped my stomach get started off on a good note, and it tasted great! August 10 brought my 18th birthday! I celebrated by having a picnic and boat ride at the lake with all of my family before going to the Iowa State Fair. I felt great on my birthday! I didn't feel like I had "turned the corner" but I knew I was close.
 Now that I was 18, I could finally get my ears pierced. My mom's rule was that my sister and I had to wait until we were 18 to get our ears pierced. My friend, Elizabeth, and I had made plans to go to Claire's together and get my ears pierced ever since we were little. Elizabeth has had her ears pierced three times so she was full of advice and tips. My mom, Elizabeth, and I made a day out of this big event by going out for lunch before the piercing and shopping afterwards. My mom couldn't watch me get my ears pierced because she thought she would throw up so she waited outside. Having my ears pierced was just like having blood drawn or an IV started. I had no problems with the piercing, and I fell in love with my new look!

No big deal! :P

 My senior year of high school started a few days after I got my ears pierced. I had some stress and anxiety about starting the math class at the community college and that resulted in me not feeling well. I still struggled on and off with the gastritis pain even when I had taken my pills at the right time so I knew I wasn't 100% yet, but I was so close!
 I accomplished a great feat on August 25: I ran my first 5k race at the church that I work at! I finished in just a little over 30 minutes, and I was in the top ten finishers. My health might not be perfect, but I was in awe of the progress I had made. Two years ago in August 2011, I was dangerously sick and waiting for an answer. I was healthy in August 2012, but I was in no position to run 3.2 miles. Had I turned the corner? I think so.....

TO BE CONTINUED.....

Finishing my first 5k!!

April & May 2013: Winter Has Come Back Again

April 2013:

We left off with me having stomach pain and extreme fullness just a few bites in to breakfast on April 12, 2013. This continued for the rest of the day. Thankfully, I was able to escape the pain while having a fun time with my friend Elizabeth. The pain was back the next day and stayed for the rest of the weekend. I had increased my Miralax, in case I was constipated, but that didn't seem to be the problem. I was starting to get worried. My biggest fear was that the gastroparesis was getting worse; what if I ended up having to have feeding tubes like Beth? My mom called Nurse T. to get her opinion. We had stopped the weekly weight checks at the end of 2012, and while it was great to not go to the hospital every week, I did miss talking with Nurse T. Nurse T. suggested that we come in to see Dr. S., my pediatrician, so we made an appointment for the following Tuesday. At that appointment, Dr. S. said, "I see people all the time who have stomach aches, but I always flinch more when it's you." Dr. S. said that it could be a virus, but he seemed just as worried as we were. Dr. S. decided to order an abdominal x-ray because of my history with stomach/bowel problems. Besides, the pain and fullness, I felt fine. I didn't feel lethargic or achy. After waiting for what seemed like an eternity, the x-ray results came back. I had, once again, colonic constipation. I just about cried. I did not want to go through another clean out process again, but it was the only option. In addition to this, I was also very close to finishing my junior year of high school. That means I was preparing to take the ACT test in a few weeks, and I was very nervous. I didn't have time to get cleaned out! I was somewhat relieved that it was "just" colonic constipation, and not worsening of my gastroparesis or the dreaded "something else". I started the all too familiar clean out process by drinking another magnesium citrate. I did have improvement after the clean out, but the fullness returned a few days later. As my luck would have it, Dr. S. was on vacation so Nurse T. suggested that I see a different doctor within their practice, Dr. El. If you remember from "The Devil Wears a Lab Coat", I saw Dr. El. briefly when the medicine Dr. Satan put me on caused my chest to feel tight. Dr. El. is a very sweet doctor who calls his patients "sweetheart", "beautiful", and "princess". I was a little nervous to see a new doctor, since Dr. S. knows me and my history so well, but a few minutes with Dr. El. assured me that I had nothing to be nervous about. Dr. El. wasn't so sure that I was completely cleaned out, even with the magnesium citrate. He wanted me to do an enema one a day for three days and drink mineral oil three times a day for 3-5 days. I think we're all familiar with enemas so I won't disgust you by providing details about that. Mineral oil, however, is something not everybody is familiar with:
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Mineral Oil:  a distillation product of petroleum, especially one used as a lubricant, moisturizer, or laxative.
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Drinking mineral oil is like drinking Elmer's glue, the runny type. It's slimy and covers your entire mouth in this slime. It was absolutely disgusting! I was spending a lot of time in the bathroom, but still not feeling like my normal self. I was still full early into meals, and my stomach felt like it had been beaten with a baseball bat after I ate. I was starting to doubt that this was just constipation.

May 2013

With school and the ACT test behind me, I tried to start enjoying my summer. I was working more hours at the daycare and coming up on my one year anniversary there. Wedding plans were also picking up speed as we approached the July date of my brother's wedding. Showers, dress shopping, craft days, and mint making days took up most weekends. I still continued to run and make great progress on the Couch 2 5k plan. I also still battling these mysterious new stomach issues. I felt so full that eating was once again very difficult. I had stopped eating all bread products because they felt too heavy in my stomach. Nothing seemed to help my stomach; I tried Altoids and peppermint tea but that didn't help. The only thing that made a tiny difference was sucking on peppermint hard candies; I usually averaged about five a day. I saw Dr. El. again on May 1 since I had absolutely no improvements. Dr. El. wanted me to have another x-ray of my abdomen, but his in office x-ray tech wasn't there that day. I made the familiar walk over the hospital and into outpatient admitting. I usually have great experiences with x-ray techs, but this time wasn't so great. I had two women, one of which was a student, who argued the entire time. They disagreed on where the top of my leg was, where to put the x-ray, and how many pictures to take. I was relieved to finally get away from them. Dr. El. told us that once the results were back, he was going to ask both Dr. S. and Dr. Di (my pediatric GI) to look at the results with him. Dr. El. was also starting to wonder if constipation wasn't the problem, and he thought it was time to bring Dr. Di in. Although I would rather not be in this situation, I was comforted by the fact that all my doctors would be working together for me.
 The next day, I was finishing taking a shower when I heard my mom run down the stairs and knock repeatedly on the bathroom door. Something was wrong. I could hear panic in my mom's voice as she said, "Sarah....the receptionist from Dr. Di's office called, and he wants to see you tomorrow morning." We hadn't heard anything from anybody about the x-ray results. Was it so bad that my GI doctor wanted to see me? It's difficult to get an immediate appointment with Dr. Di so why would they need to squeeze me in as soon as possible? My mom called Nurse T. to get her opinion. Nurse T. said that the x-ray showed that my colon looked much better, but she thought we should take the appointment. I was scheduled to work a full day at the daycare, but my boss said I could leave for the appointment and then come back. I was so nervous; I had no idea what to expect.
 The unexpected appointment fell on my second anniversary of being gluten-free. I tried to not think about how depressing it was that I was still having stomach issues even after two years of being on the gluten-free diet. My mom picked me up from work and we drove though a snowstorm (yes, a snowstorm in May) to Dr. Di's office. When he asked me what was going on, I did my best to make it clear that I felt full but not a constipation-like full. Dr. Di said that he wasn't 100% sure that constipation was the problem, but he wanted me to do one more clean out just in case. When Dr. Di asked if I was able to get a magnesium citrate down, my mom informed him that I had drank five bottles of magnesium citrate since this problem started less than a month ago.
"You drank five bottles of magnesium citrate?!?!" He exclaimed.

Surprise from my mom!

My mom further revealed that I did three enemas (to which Dr. Di rolled his eyes and stuck out his tongue) and 15 ounces of mineral oil for five days ("oh ew...I don't even know why they use mineral oil anymore!"). Thankfully, Dr. Di had a much less aggressive clean out plan: a mega dose of Miralax twice a day for five days. If I still didn't have any improvement, I would swallow radioactive pills and have x-rays taken to see where the pills were and if there was a slow down anywhere. Dr. Di had been in communication (by texting!) with Dr. El., and they both thought that I could have gastritis--inflammation of the stomach. After confirming the plan, Dr. Di left with his usual, "hang in there", and my mom drove me back to work. I went into the appointment feeling very nervous, but I felt confident about the next plan. All I need is a plan.
 Since it was my second anniversary of being gluten-free, my mom surprised me at work with green (the celiac disease awareness color) flowers and balloons!

I was going to the bathroom more, but I still felt the same. I finally knew that constipation was not the problem. Dr. Di prescribed omeprazole to treat possible gastritis. When I picked up the medicine at the pharmacy, I asked the pharmacist how long it would take to kick in.
"It depends." The pharmacist said. "What do they think is wrong with you this time?"
That is a sign that you have been too sick for too long!
 On Friday, May 10, I started the Sitz marker test:
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Sitz marker test: Radioactive pills are swallowed and two x-rays are taken three days apart. The x-rays show how the rate that the pills are moving and checks for obstructions.
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Call me a nerd, but I think this is incredibly cool! Nurse J. in Dr. Di's office gave me the pills to swallow, and my mom and I went over to the hospital for yet another x-ray. We would come back for the next x-ray on Monday.
 Meanwhile, I completed a big accomplishment: I ran all the way around the 2.2 mile lake! I was so proud of myself and the progress I had made. Although my stomach was fighting me again, I fought back by doing what I wanted to do. The Sitz marker test results came back on May 14, showing that I had slow transit constipation on the right side of my colon where the small intestine hooks on to the large intestine..

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Slow transit constipation (STC): This syndrome is attributed to disordered colonic motor function.
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This sounds like another scary diagnosis to add to my list (and maybe for some people it is), but it really isn't. Dr. Di wanted me to take two senna (a laxative) tablets for two weeks. My mom asked when the omeprazole would start working, and Nurse J. said to give it two weeks. Meanwhile, I continued working and running while fighting the stomach pain and fullness. Towards the end of May, my symptoms began to get worse. My stomach started to hurt constantly, not just after eating. I kept track, and I felt full three bites into a meal. I was already eating half size portions because of my gastroparesis, but now I could only manage 1/4 of a meal. I jokingly said that it was time to take another beating whenever it was time to eat, but that's truly how my stomach felt after I ate. I was also tired and usually took a nap in the afternoon.

A climbing wall champ

 I tried to enjoy myself at our annual Memorial Day camping trip. I climbed to the top of the climbing tower though! The weather was nasty and prevented us from being outside as much as we usually were. Plus, I was so uncomfortable. Now I woke up feeling full and in pain...before I even ate anything! My mom was going to call Nurse J. as soon as the long weekend was over. Something was definitely very wrong. I tried to not get down in the dumps about how I was feeling. I was still shocked that all this had happened again. How did I go from delivery cookies because I felt so great to x-rays and numerous doctor appointments?
 My mom called Nurse J. after Memorial Day and told him about my symptoms. The omeprazole didn't help and taking the senna tablet didn't help. What else could we try? I probably should have seen what happened next coming, but it still took me by surprise. I was outside walking my cat (yes, I put a leash and collar on my cat and walk him around the backyard) when my mom came outside and over to where Oliver and I were. I could tell by the look on her face that she wasn't happy.
"Dr. Di wants to do another endoscopy and colonoscopy on June 6."

TO BE CONTINUED.......

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"

August 2012: The Fight is Done; The War is Won

August 2012

Finally...the post I've been waiting to write since I started blogging! I was so excited for "Celebration Weekend" with my family. Leading up to the big weekend, my grandparents sent me a nice card and a generous check to celebrate with me. They wanted me to buy a cross necklace, and I found a beautiful necklace along with a ring with footprints on the front and the lines "it was then that You carried me" etched on the inside. Since my grandpa introduced me to that poem, I thought it was only fitting that I used his money to buy it.



boating

At church

 Celebration Weekend started on Saturday, August 4. My family and I went to the downtown Farmer's Market and enjoyed ourselves immensely...until the heavens opened and we were heavily rained on! After the Farmer's Market, we went out for lunch at Biaggi's, an Italian restaurant that has delicious gluten-free food. I made sure I ate exactly half of the pasta so I didn't feel too full. After lunch, we hit TCBY for frozen yogurt/sorbet before seeing The Dark Knight Rises in the IMAX theater. After dinner at home, we went bowling. I'm a terrible bowler, but I had fun laughing at myself anyways. It was especially fun when glow-in-the-dark bowling started! I went to bed that night feeling great and very thankful. The next day, Sunday, my parents placed flowers on our church's altar to thank God for the return of my health. I also played a piece on the piano for offering and my pastor read a prayer of thanksgiving that I had written. Several church members greeted me after the service with hugs and kind words. After church, we had updated family portraits taken before going to Big Creek for a pontoon ride. If you've never rented a pontoon before, I would highly recommend it! It's so peaceful and relaxing. The weather was absolutely perfect, and my family and I enjoyed laying out in the sun while lazily floating on the water. Our evening plans included grilling and mini-golfing. After we ate, my mom gave me a Willow Tree figure that she had been saving until I felt better. The figure is called "J'taime", which is French for "I love you". Mini-golfing was really fun! I am surprisingly much better at mini-golf than I am at bowling. It was the perfect weekend; there were several moments where I was shocked at how well I felt. I couldn't believe that I had finally made it to this point.

Willow Tree

The fun continued a few days later with the Tenth Avenue North and Toby Mac concert at the Iowa State Fair. The concert was August 9, and my birthday is August 10 so my parents included my ticket to the concert as a birthday present! It was an awesome concert! It was so great to listen to the songs by both artists that uplifted me and kept me going when I was so sick. The next day was my 17th birthday! I had a fun morning babysitting Lucy and Collin before my mom and I went to a bridal shower for a girl at our church. After the shower, my mom and I got manicures! We had so much fun. My birthday ended with homemade pizza at home, presents, and watching the 2012 summer Olympics in London. I was thoroughly spoiled with presents, but the best present of all couldn't be wrapped in a box: feeling well. I jokingly put a bow on my stomach and took a picture of me with the best present ever....a stomach that feels well! It was still amazing to me how well I felt. All I had known for 22 months was not feeling well. I was practically bouncing off the walls because I had so much energy! Since my stomach had so many problems for so long, it almost felt weird and strange to not feel chronically sick to my stomach. I felt like a completely new human being!

Best birthday present ever!

 I wanted to get back in shape. Walking on my NordicTrack after eating helped me feel less out of the breath, but I still had difficulty carrying my own laundry basket from my room down three flights of stairs. A friend recommended going to see a physical therapist who might have some ideas on how to get back in shape. I met with a doctor who suggested I see the therapist in her office twice a week. The first appointment was scheduled for the next week.


Finally!

 August 15, 2012 was the day that kept me going through my health journey. I think I mentioned this a few times in previous posts, but it's time to elaborate a little bit. Around the time of my surgery (September 2011), I came up with the idea to get a Build-A-Bear after I felt better, dress it in scrubs, and name it after the doctor who got me feeling better. Of course, I should have known it wasn't going to be that easy. For 11 months I dreamed about the day when I would make that Build-A-Bear. I felt sad every time I walked past Build-A-Bear Workshop in the mall, and I was jealous of the people (mostly kids) walking around the mall with the iconic Build-A-Bear box. I had even been saving some of the money my grandparents sent me after my surgery for this bear.This was another "wellness bucket list" day that I was too scared to plan in case "something else" happened but after a whole weekend of celebrating my return to health, I figured it was time. I wanted to drive out to the mall--since driving was something I wasn't able to do when I was sick. Those of you who have been to Build-A-Bear know the routine. I picked out the carcass (what else would you call it?!) of a dark haired bear that was created on August 21, 19-something. I thought that was a funny coincidence since August 21 was the day when I got sick with mono. I stuffed the bear, put his heart in, and gave him an air bath before naming him. It took me a while to come up with the perfect name, but in the end I combined the first and/or last names of Dr. S. (my pediatrician), Dr. D.S. (my first GI), Dr. Di (my second and current GI), and Dr. R. (my surgeon). I added M.D., D.O. on the end of the name to make it sound more official. My mom came up with the cute idea to add black dress shoes with the scrubs in honor of Dr. R.'s sense of fashion. The store carried the black shoes, but I had to order the scrubs online. After it was all said and done, I cried tears of happiness in the hallway of the mall. I couldn't believe that I had my bear! It all seemed like a wonderful dream; my mom said that I had woken up from a nightmare.

There he is!

 A few days later, I started on the next item on my wellness bucket list. I had a follow-up appointment with Dr. Di the next week. When this appointment was made, I had just been hospitalized. I was amazed at how far I had come in four months. I made it a goal to take cookies and handmade thank you notes to the doctors and their staff who got me feeling better. It just so happened that I needed a TB test and a physical for my job at the daycare. Nurse T. squeezed me in Dr. S.'s busy schedule the day before my appointment with Dr. Di. This would be the perfect opportunity to give Dr. S. his thank you note. I set to work on crafting beautiful cards for my doctors. I also wanted to make cards for Nurse. T. and Dr. R. As a little reminder of me, I wanted to insert of picture of me with a sign saying "Thanks Dr. _____" in the thank you note. On a beautiful Sunday afternoon, my mom and I went to the lake (the same lake that we had walked around countless times when I was sick) to take pictures.
 August 21, 2012 was a special day. Not only was it my sister's birthday, but it was also the second anniversary of me getting sick. Last year, I was crushed on this day because I had been sick for one year. This year, however, I was thankful and excited about how great I felt. I may have been sick for 22 months, but I would take 22 months over 24 months.


End result

Very messy table!

 The next day was the big cookie bake for my doctors! In three hours, my mom and I baked chocolate chip cookies, peanut butter cookies, chocolate cherry cookies, rice krispies, and three giant chocolate chip cookies for my doctors. The house smelled amazing! I had been looking forward to the day for a long time and it lived up to every expectation! After baking cookies, we went to my first appointment with the physical therapist. It turns out the therapist specialized in visceral massage therapy, especially targeting the stomach and colon. The therapist was hopeful that some massage therapy would naturally help my stomach and colon move more. I was unsure of the whole concept at first, but the massage actually felt really good!

Cookie delivery day!

 Thursday, August 23, was labeled Cookie Delivery Day. My mom and I packed up Dr. S.'s thank you note and big cookie, Nurse T.'s card, and the tray of cookies for the staff. I also made a tray of cookies for the third floor (where I was hospitalized) and a special cookie for Dr. R. I drove the very familiar path to Dr. S.'s office. The receptionist recognized us, as always, and we briefly waited in the waiting room. I've never had that much fun in a doctor's office before! Nurse T. was thrilled with all the cookies and she had S., my favorite lab tech, come over and say hi. While we were waiting for Dr. S. to come in, I marveled at the fact that we were in the same room that we usually are when I visit my pediatrician but this time was different. When I was in this room for the past 22 months, I was beyond sick. I was exhausted, nauseous, pale, in pain, and I just wanted to feel better. This time, I was bouncing with energy, my stomach felt great, I had a healthy glow, I wasn't in any pain, and I felt a million times better! Dr. S. was so excited and happy that I was feeling better. He was also very touched by my giant cookie and card. He kept repeating, "you are too kind!" I wasn't expecting him to read my heartfelt thank you note in front of me so I was surprised when he looked up at me with tears in his eyes and gave me a huge hug. My mom took pictures of me with Nurse T. and Dr. S. before we left. Cookie Delivery Day wasn't over yet though; next we walked across the street to Dr. R.'s office. There was some extreme deja vu going on as I walked through the waiting room to the front desk. I flashed back to September 2011 as I sat, freezing cold and in so much pain, waiting to see the surgeon. I was amazed at how much progress, and how much I had been through, since the last time I was in this waiting room. I dropped the thank you note and cookie off with the receptionist and left the eerily familiar waiting room. I was impressed at how well my mom and I knew our way around the hospital as we made our way to the pediatric floor. I had another deja vu moment when the elevator doors opened to reveal the colorful and welcoming entrance of the pediatric floor. It was almost hard to believe that I was hospitalized on this floor just five months ago. As my mom and I drove home, I was filled with so many emotions. Usually on our trips home from the hospital, both of us were upset and my mom was on the phone with either my dad or grandpa. This time, we had actually made wonderful memories at the hospital!
 Day Two of Cookie Delivery Day came the next morning, August 23, when I had my follow up with my GI doctor, Dr. Di. Once again, I drove the familiar path to the hospital. While waiting in the waiting room, I thought of everything that had happened in the year (almost to the exact date) since I had first seen Dr. Di. I had been referred to him last August after my first GI doctor ran out of ideas. I had a second endoscopy and my first colonoscopy. I had my gall bladder removed. I went to hell and back-also known as the University of Iowa hospital. I had colonic constipation. I was hospitalized. I was diagnosed with IBS and gastroparesis. Now I was healthy! Nurse J., the nurse in the office, was happy to see me and hear that I was feeling better. He was also overjoyed with the cookies.
He said, "I've talked to your mom so much that it's kind of like we're family." I couldn't agree more! Shortly after Nurse J. left with the cookies, Dr. Di came in. He told me that I looked great, especially since I was always very pale whenever I came in. As for my medicine, he wanted to keep everything the same. He was very grateful for the tray of cookies and joked that I could come back every week with cookies. I would gladly do that! He was also grateful for his special cookie and card; he said that a lot of their patients and parents complain that he isn't doing enough. Both my mom and I repeatedly thanked him for everything he has done, but he humbly told us that we did all the work. After the appointment we made a follow up with the receptionist, who can always recognize me and knows my
 name, Nurse J. was looking over her shoulder and telling her to make the appointment when he was in the office.
"Sarah....you are beautiful. I know I'm not supposed to tell a lady to gain weight, but you should." Nurse J. complimented me. We all said goodbye and another round of thank you's before leaving.

My best friends :)

 I had the greatest feeling ever after two successful cookie delivery days. I felt like I was on top of the world. It still didn't seem possible that I had finally made it. I was 100% healthy and checking things off my wellness bucket list. Another item on my bucket list was to have a sleepover with my two dear friends. We had been planning a sleepover for over a year, but I was never healthy enough for it. I decided this sleepover would be my birthday party for the year, and we had a blast! We walked at the lake, and stayed up late watching movies and gossiping. The next day, we went to TCBY for frozen yogurt/sorbet and did some shopping. Both of my friends were so loyal while I was sick, and it was great to celebrate with them.
 August 30, 2012 marked my first day of my junior year of high school AND the start of my first year of high school that I was healthy for!

You might be expecting a big finish for the end of the my healthy journey. Of course, now that I'm healthy and done all these fun things to celebrate, why wouldn't it be the end? Alas....

TO BE CONTINUED.....

July 2012: "Finally Turning Around"

July 2012



Great day!

As the summer days became hotter, I became closer to feeling 100% better. The month started off a little rough with the 4th of July. My brother, his girlfriend, and her parents all came to Des Moines for the holiday. We ate out at P.F. Chang's one evening, and the meal made my stomach very upset. Not like a gluten ache, but still upset. The next day, the barista at Caribou Coffee put regular milk in my tea latte instead of soy milk. That caused a dairy ache that lasted all day. Before the milk incident, my mom and I went for a paddleboat ride on the lake. My stomach had settled down from the previous night's meal, and I had no nausea! I felt much better the next day, July 5, when my mom, sister, and I went swimming. I brought lots of water along to keep cool and hydrated, and I was able to lay on my stomach while reading! I felt well most of the time, but I still felt sick and bloated after eating. I was still dividing lunch and dinner into two separate meals, but I was getting really sick of feeling full and bloated after eating. I had noticed that the feeling went away if I walked around after I ate. My aunt suggested that I make it a habit to take a walk every time after I ate. Walking would help move the food through my stomach and help me feel better. My grandparents gave me their old NordicTrack to use if it was too hot or raining to walk outside. I started using the NordicTrack after eating, and the result was miraculous! I "walked" on the NordicTrack for the length of one song of my iPod, and I felt tremendously better after doing that. Not only did using the NordicTrack help me feel better physically, it helped me mentally and emotionally also. I was usually crabby after eating because I felt sick, but the release of endorphins while exercising took the crabbies away along with the bloated feeling. It also helped me get back in shape physically. I was still out of breath from walking up the stairs, and I couldn't carry my own laundry basket. A few weeks after starting the NordicTrack routine, I noticed that I wasn't out of breath and my chicken leg like calves actually had a tiny muscle on them! I also went on bike rides with my mom, which helped me feel more positive, hopeful, and happy. On July 12, I was supposed to meet a friend from the GF support group for lunch but my friend had to cancel. It really wasn't a big deal, but it was the final breaking point for me. I was fed up with having nothing to do. On days when I didn't babysit, have my weekly weight check at the hospital with Nurse T., or volunteer at the food pantry, there wasn't much to do. My mom and I still went some place every day, but I was growing bored with that routine. I didn't feel confident enough about my health to apply for an actual job yet. I wanted to get a job at a daycare; I love kids, and I felt like I had enough experience after babysitting Lucy and Collin since 2009. My mom tried to explain to me that I was well enough, but I argued that I still felt sick occasionally. My mom told me that there might be days where I didn't feel well but that was because I had irritable bowel syndrome. A syndrome is a group of symptoms that consistently occur together. There was no cure to IBS, just ways to manage the symptoms. I kept waiting for the magical date when I would officially recover from IBS, but my mom helped me realize that there was no such thing. With any type of syndrome (like Down syndrome for example), there are daily symptoms, complications, and struggles. It was up to me to manage the symptoms and side effects of IBS since there is no cure. This was a "mind blown" moment for me. I had not realized that I  made it; I wasn't sick anymore. Whenever my stomach felt even the tiniest bit upset, I completely lost it and thought that I was showing signs of another problem. In my own defense, being diagnosed with one problem after another was all I had known for 22 months. I found it hard to accept that I could have a stomach ache without having another new problem. I wanted to look for jobs, but I was so nervous that I would be hospitalized or diagnosed with something new as soon as I applied for a job. I knew no other employer in the world would be as kind and understanding as Erika, Lucy and Collin's mom, when it came to my health. My mom encouraged me to look into what daycares were hiring and pick up an application. She told me countless times that picking up an application was completely different from actually applying for a job. I would returned the filled out applications once I felt comfortable. So I did just that. I found two daycares that were hiring and picked up applications. On the way back to the house, my mom and I drove past a Catholic church just up the street from our house. We had driven past this church a million times since it's on a central street that we use every day, but I never knew there was a daycare there until I saw a sign advertising openings in the daycare. My mom wrote the number down, and I called later that day to see if they were hiring. They were so I stopped in for an application. I immediately liked the feel and atmosphere of this daycare WAY better than the other two. I waited a couple days, all the while feeling well and bored at home, and then I returned the applications. I got two on-the-spot interviews, one of which was at the Catholic church. I ended up getting a second interview at the Catholic church, and the supervisor of the daycare told me that there was a 99% chance of me being offered the job, but she would let me know early next week. Until then, I prayed that I would continue to feel well.

On July 21, I had the great opportunity to go on my first college tour. I would be a junior in high school in the Fall of 2012, and I had pretty much made up my mind that I wanted to be a dietitian. Even though what I had been through was rough, some of the good that came from it was this decision. I knew there were other people out there who had just been diagnosed with celiac disease, IBS, gastroparesis, and a host of other diseases that required restricted diets. If I could share something that helped me with somebody else who was suffering, then all of my suffering would seem to have a purpose. I knew Iowa State University (ISU) in Ames, Iowa had a popular dietetics program so I requested more information. Of course, they sent me postcards and sold my name to other colleges, but I was thrilled to get a postcard about a day called "Just for Juniors": juniors in high school were invited to visit the campus, go on a tour, learn about all the programs, and eat lunch in one of the cafeterias. I had been on the ISU campus once during a church youth rally, and I remember it being very big and beautiful. I was curious to see how the school would handle my restricted diet. On the registration form, there was a box where you could list any food allergies. When I was first diagnosed with celiac disease, one of my worries was: how am I supposed to go to college?! I figured this would be a good test run for ISU. I was beyond excited when the morning of July 21 came. It's about a 45 minute drive from Des Moines to Ames, and I couldn't wait to get a glimpse of the campus. I fell in love as soon as we got there. Our day started in a beautiful old building that looked like something you would see in Europe. After a few welcome and introduction speakers who talked about the different colleges and majors, it was time for lunch. I was so nervous about how lunch would play out. We had been instructed to tell whoever was at the front desk of the cafeteria that we had a special diet request. We were directed to meet with a woman who asked me if she could make me a pizza. Oh great...here we go. Hello dairy cheese and completely cross contaminated! My mom immediately jumped on the cheese issue and I tackled cross contamination. The woman calmly explained that they had dairy-free cheese available and the pizza would be cooked correctly. While I cautiously ate a dairy-free cheese pizza on a gluten-free crust, the woman told us all about how ISU handles food allergies. I was SO impressed! In the Fall of 2012, they were going to open a special diet kitchen that would handle all the food allergies. There was always GF pasta, DF yogurt, and DF milk available along with several other options. As I left lunch to listen to some more speakers, I had a wonderful feeling inside of me. I wasn't contaminated, and I felt very confident that ISU would be able to cater to my needs if I decided to go there. Once the day was over, I knew for sure that ISU was the right school for me. I could easily see myself on campus in two years!

Cy the Cyclone

Back in Des Moines, a few days after the college visit, I got a phone call from the Catholic church. I got the job!! I was so happy, excited, and grateful. When I called my grandpa to tell him the good news, he said: "I think your life is finally turning around."
 My first day at my new job went well. The same day, my mom and I made an official decision: we were going to plan a whole weekend of celebrating my return to health! It was something that I had been thinking of for a while, but I was too nervous to bring up in case "something else" happened. During the weekend of August 4-5, nobody but my parents, siblings, and me were going to do all sorts of fun things together as a family. Once I decided on the weekend, I began to feel anxious that I would wake up one day and not feel good or something else would happen. I noticed that when I felt nervous or anxious, my stomach immediately became upset. This is very typical of IBS. I was also having trouble adjusting to the new routine of working. I worked a morning shift so I had to get up at 6:00 a.m. By the time evening hit, I was drop dead tired. Of course, I didn't like that because that's how I felt when I was sick. My genius mother figured out that it was all related to my medicine, amitriptyline. Amitriptyline (which I was on for IBS pain) has a sleeping pill component. About a hour after I took the pill, I would fall into a deep sleep. When I had to wake up at 6:00 a.m., I didn't have all of the medicine slept off. This caused me to feel exhausted and very emotional. Somehow my mom figured out that I needed at least 7 1/2 hours of sleep to feel like my regular self again. Like always, my mom's plan worked!

At the end of July, I sort of "self-diagnosed" myself with post traumatic stress disorder (PTSD). I didn't feel like it was necessary to talk to a professional about it (my mom reminded me that it was okay if I needed to do that), but I often felt sad and sort of depressed about what I had just been through. I think the severity of my health issues finally hit me after I felt better. My mom told me that I was too busy surviving and fighting for my life to realize what exactly was happening. I never put it together that I had been diagnosed with three chronic and life-altering digestive diseases, I went through surgery, and I was hospitalized all in less than 12 months. I still had very dark moments when I thought about Dr. Satan in Iowa City. I would be just fine and then something very faint and discreet would somehow give me a flashback to either going to Iowa City or the aftermath that followed. Then I wouldn't be able to stop thinking and re-living those moments for the rest of the day. I had the same moments when I thought about the dark days when I was sick. I had  regretful feelings about the things I said when I wasn't feeling well and how I handled my health issues in some situations. These are still things that bother me to this day, two years later. I was almost paranoid about never feeling sick ever again. Of course, that's impossible, but I would have a total meltdown if I had even a mild stomach ache. Usually, I was either constipated or stressed out/anxious/nervous. I was learning that I had to manage stress and other negative emotions if I wanted to feel well.

Hot air balloon ride

 The opening ceremonies of the 2012 Summer Olympics in London was a nice distraction. I am British at heart so I loved every opportunity to see live video of London. I even made an adorable (if I do say so myself!) Union Jack flag cake to celebrate the opening ceremonies! The month of July started off a little rough, but it was ending great! I was able to go on a hot air balloon ride with my mom and sister at the Indianola Balloon Festival, and that was really exciting and a little terrifying! I was settling into a routine with work, I knew what college I wanted to go to and was confident that they could feed me, I was learning how to manage my emotions and health, and ultimately...I felt 100% better!

I had made it.

TO BE CONTINUED......

My Union Jack cake

June 2012: Progress is Still Progress

June 2012

Having fun with Elizabeth!

I was learning the hard way how awful being cross contaminated with gluten was. For 12 days, my stomach felt like the fireworks on the 4th of July. I was also exhausted all the time, I had terrible headaches, and my legs ached. It was hard to assess how the amitriptyline was helping my stomach while under attack from gluten. My mom reported the progress that I had made to Nurse J. at my pediatric GI doctor's office. I was definitely feeling better but not 100% so Dr. Di increased my amitriptyline to 50mg. I was very optimistic that the increased dosage would do the trick.

"Horse Therapy"

 After I recovered from being "glutened", I began to get back to a normal life. I had a sleepover with my friend Elizabeth, and I felt like a regular teenager for the first time in a long time. I realized that teenagers are supposed to splurge on junk food, jump on trampolines, and stay up late watching movies with their friends. I felt like one of those regular teenagers and not like a teenager who had spent more time in doctors' offices than at friends' houses. I also paid a visit to my grandparents and went on a horseback ride at a nearby camping ground. I felt so relaxed during and after the horseback ride that I went on while camping so my mom thought it would be beneficial for me to do it again. The next day, I started volunteering at the Des Moines Area Religious Council (or DMARC) food pantry warehouse. I was getting very bored and restless being at home all the time. I still wasn't healthy enough to commit to a job, but I needed to find something to do. I helped the employees of the food pantry sort through donated items to make sure they weren't expired and then boxed the donations. I volunteered once or twice a week, and it ended up being a huge blessing! I really believe volunteering there helped me mentally by having somewhere to go and physically by the movement and lifting of heavy boxes that was required.
 On a Saturday, my sister and I went to the beach at the lake. While the water is absolutely disgusting and filled with who-knows-what, we enjoyed laying out on the beach in the sun while listening to music. I felt so great! I was thrilled to be able to lay on my stomach (something that I wasn't able to do because of how sensitive my stomach was) and get some sun. That evening, my siblings and I went to an Iowa Cubs baseball game with our mom. None of us really care about baseball (my brother quizzed me about baseball rules while I quizzed him about England's kings and queens),  but we had a blast anyways!

Hannah

 A few days after this glorious day, I had a very memorable day on June 12. I had been emailing with a girl named Hannah for over a year by the time we finally met in person. Hannah's dad is a very talented traveling Christian musician, and he was passing through Iowa on one of this tours. I was so excited to meet Hannah! She was diagnosed with Crohn's disease the day after I was diagnosed with celiac disease. Although our conditions are different, we are able to sympathize with each other when it comes to nausea, pain, loss of appetite, restricted diets, and anything else digestive related. We had a fantastic day together, and I was sad to see Hannah and her lovely family drive off to their next destination. Fast forward two years, and Hannah and I are still emailing! To top off a great day, there were moments during the day when I had absolutely no nausea at all! I was beyond thrilled and grateful. I was so used to having a chronic stomach ache that I was taken back at how different it felt to not have a stomach ache. Was this it? Did I make it to the other side?! Unfortunately, no. The next day, I accidentally ate some granola that had whole nuts and honey, two IBS no-no's, that made my stomach upset and hurt for the rest of the day. The day after the nuts and honey incident, I picked up some nasty flu bug. I went from having minimal to no nausea to feeling like I was going to throw up. I had to cancel fun plans to go shopping with Elizabeth and her sister, and that made me upset. I was so sick and tired of having to cancel plans just because I didn't feel well. I hated it when my health prevented me from doing something. This bug lasted for about three days, and then I felt better. I was able to go shopping with Elizabeth and drive myself to volunteer at the food pantry. While I was still frustrated about not feeling 100% better, I was very thankful that I was able to drive myself again. I was impressed at how far I had come!

Towards the end of June, I felt like I was going to turn the corner very soon. A church member told me one Sunday that I looked like I was feeling better. My diet was very restricted, but I finally felt like I had that aspect of my health under control. I read in a book about IBS that symptoms are often worse in the heat. Iowa has some steamy summers so I started drinking cold water whenever I was outside. As is typical with IBS, I still struggled with abdominal pain and constipation. I was definitely in less pain, even if it was still a level eight when it hit occasionally. It always seemed that I was feeling better (almost to the point of "calling it") and then I take two steps back by being hit with another round of nausea and constipation. I was beginning to notice a trend between those two lovely topics. I remembered my surgeon, Dr. R., telling me: "Constipation causes nausea." Now I was on a mission to fix this constipation problem once and for all.

TO BE CONTINUED.....