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