It Has Changed Me

January 2016

"He hasn't ruined you. You're living proof of that." 

"No, but he has changed me."

{Downton Abbey, season 6}

One of my New Years Resolutions was to "accept my flaws and weirdness". Yes, that's exactly what I wrote on my mom's cute chalkboard sign. Lately I've been thinking a lot about the interesting little quirks that I have and more importantly, why I have them. Doing this has lead me to realize that all the unique things that make me who I am have come from events in my past. Let's take a peak into the mind of Sarah, a college sophomore with celiac disease, IBS, gastroparesis, gastritis, hypoglycemia, depression, anxiety, panic disorder, and myofascial pain syndrome (new diagnosis...woot!).

-My Physical Health Journey-
*I have an extreme intolerance to people who go gluten free to lose weight and "be healthy."
*I am a million times more compassionate towards people with illness and/or disabilities.
*I have found my true calling in life: to feed premature babies and help kids with digestive disorders.
*I am comforted by the smell of the soap in doctors offices because it reminds me of the pediatrician and pediatric GI doctor.
*I love hospitals. I could spend hours exploring hospitals and learning how they work.
*Being somewhere without food or medicine gives me a lot of anxiety.
*Any new symptom is immediately looked up online and turned into a new diagnosis.
*The Harry Potter series is so special to me because it gives me an escape.
*The hospital in Iowa City gives me immediate panic attacks; even talking about it makes me nervous.
*My heroes all have either M.D. or D.O. behind their names.
*I have a teddy bear named after my doctors, and it's one of my most prized possessions.
*Learning about the human body makes me happy.
*I cry through every children's hospital lip dub video on YouTube.
*I have no problem discussing bowel functions with anyone.
*Even though I've been managing chronic illness for five and a half years, I still get tired of it and miss the person I used to be.

-My Mental Health Journey-
*Roger, my emotional support animal, is my best friend. Mess with him, and I will end you. If you don't like him...I probably don't like you,
*Sometimes I want to cry, but I don't know why.
*Sometimes I feel very nervous for no reason.
*For KING & COUNTRY is so special to me because the lyrics to their songs describe my life perfectly, give me hope, and bring me joy when not much else can [It's Not Over Yet, Busted Heart, Sane, Priceless, Shoulders, Crave, and To The Dreamers].
*I have to protect myself and do what's best for me, even if it means cutting toxic people out of my life.
*I worry about having a panic attack in every situation.
*I really really really really really like hugs....like a lot.
*Even if you can't fix it, I still need love and support from you.
*Reading about the digestive tract calms me down because it's familiar.
*Sometimes I want to go out and be social, but then my social anxiety kicks in.
*My ideal Friday night includes watching a movie with my cat and coloring because I know I won't have a panic attack.
*While I don't have an official diagnosis of Post-Traumatic Stress Disorder (PTSD), I do struggle with aspects of PTSD. I have a lot of triggers that take me back to dark places in my past. When this happens, it's hard for me to remember that I'm in the present. I've tried multiple tricks but can never seem to knock this one out. What I need most is support and sympathy during those moments. Sometimes I just need to text my mom and tell her that I'm having flashbacks and then she has some great motherly advice that makes me feel better. Sometimes I just need a hug.
*I struggle with what I'm worth. Living with nine chronic illnesses is definitely very time consuming and as you've read, a big part in who I am today. It's easy for me to think that no man in his right mind would ever want to date, and eventually marry, me. Sometimes I feel very flawed and unaccepted. A lot of this stems from anxiety, as it can twist your brain into believe things that aren't true. I've had encounters with the male species in the past that have not ended well. Both of these losers ended up making me feel like I was nothing more than a person who they could disrespect and dishonor. These two have learned the hard way that I am no such person. However, I went through a bad phase where I didn't consider myself to be anyone special. I figured I was unlovable and just attracted all the losers and cowards and creeps in the world. Then (get ready to go full circle) my mom surprised me with tickets to a concert for my birthday in August. We got to see For KING & COUNTRY at our state fair. I had heard their music (and accents!), and really enjoyed listening to them and the lyrics of their songs. I was completely surprised when they gave their famous "priceless speech" which starts off my saying (and yes I have it memorized): "Girls...don't let any man disrespect your relationship and never settle for second best." It goes on to say that they believe that girls should be treated with "respect and honor" and like princesses. Throw "we believe there's a God who knows you're priceless" in there and I'm in tears. Ever since then I have slowly started to believe and build on the idea that I am priceless, and one of these days God is going to send along someone who believes the same thing. The two guys mentioned above didn't respect or honor me, and they definitely didn't treat me like I was priceless. Instead of me doubting what I'm worth, they should be the ones who feel like crap on the inside. Now I can finally say that I am at a place where I love myself. There's definitely aspects about me that I'm not thrilled about, but slowly and surely I am starting to accept myself and love myself for who I am.

"I love the person I am because I fought to become her."

"Mirror mirror, mirror on the wall/telling those lies/pointing out your flaws/that isn't who you are/it might be hard to hear but let me tell you dear/if you could see what I can see/I know you would believe that isn't who you are/there's more to who you are. So when it's late/you're wide awake/too much to take/don't you dare forget that in the pain/you can be brave/and safe.

I see you dressed in white/every wrong made right/I see a rose in bloom at the site of you/OH SO PRICELESS/irreplaceable, unmistakable, incomparable/darling it's beautiful/I see it all in you/OH SO PRICELESS."-Priceless by For KING & Country 

When The Meds Don't Work And You Have To Try Again

July 2015

Hi friends, family, and followers! I've been doing alright, maybe even a little bit better. I stopped taking my medicine for depression and anxiety and instead increased the low dose antidepressant I have been taking for IBS. I've had three very good days, which are like bright rays of sunshine. I've had lots of thoughts on my mind lately, and thought I would share them here.

 Self-help books are amazing. It's okay if you feel weird in the mental health section of the library and pray that you don't see anyone you know. I've checked out 10 books about depression, anxiety, and post traumatic stress disorder. My doctor has mentioned how he thinks talking with a therapist would help me. While there is absolutely nothing wrong with seeing a therapist, that route is not for me. I felt very empowered with my stack of books and notebook that I take notes in. When I'm having a rough day, reading these books isn't a good idea and I'm better off reading Harry Potter. On days when I'm doing okay, I take immense comfort in the power of knowledge. Maybe it's the science-minded nerd that I am, but I feel so much better knowing how mental health issues happen and why these issues cause the symptoms that they do. The self-help books have also given me good tips to help manage these issues and help me feel like I'm in control. If anyone reading this is and is struggling with a health problem, I strongly suggest finding books to help explain your condition to you. Knowledge is power!

It's okay to feel the things we feel and accept those feelings. A lot of the books I've been reading have emphasized this a lot. It's important that we recognize feelings and accept them. By doing this, we can remember what caused these feelings. If these feelings aren't positive (called triggers), we can remember what caused the feelings and try our best to avoid them. For example, too much noise and stimulation gives me a lot of anxiety so I avoid places/situations that have this effect on me. Even something has simple has pausing the TV while the water in the tea pot is boiling helps me a lot. I've been able to use ear plugs at home when there is a lot of commotion in the house. At the same time, no noise at all makes me uncomfortable and takes me into my "dark place." So if I'm home alone, I watch TV or go workout until someone else is home and I feel comfortable reading.

Reaching out is so important. I've lost track of the times I've excited my mom or a close friend during an anxiety attack. I have also called my mom in a public bathroom stall during an attack. While it's not the same as being with someone else, talking it out can definitely help. There is NO SHAME in this. Reaching out, asking for prayers, or just telling someone of your struggles is not a sign of weakness. It's a sign of strength: you know you can't do this on your own and you need help. If anyone treats you differently or doesn't support you, get rid of them instantly.

Never underestimate the power of our five senses. Two of the books I read was about post traumatic stress disorder (PTSD). As I've said before, I believe I have PTSD. These books highlighted the role that the five senses (sight, smell, touch, taste, and hearing) play a huge role in PTSD. I've experienced this in a negative way: the sight of the hospital in Iowa City sends me into a panic attack; the taste of applesauce and jello reminds me of how much I ate those foods when I was sick. I'll skip the fascinating science behind this, but if you're interested, check out Recovering From Trauma and PTSD and The Everything Guide to Overcoming PTSD. These senses are so powerful when it comes to bringing back bad memories, but I've been blessed to have these senses contribute to bringing me out of an anxiety attack and calming me down: the hospital that I work at uses the same soap that my pediatricians and pediatric GI doctor use. When I randomly smelled my hands at work one day, I immediately felt a calm and peaceful vibe come over me. I didn't put it together until later on in the day, but the smell of that soap reminds me of my doctors. I spent a lot of time with these guys, and what do doctors always do when they see a patient? Wash their hands. My brain associates the smell of that soap with the feeling of peace and safety that those doctors gave me. Whenever I was with them, I felt well cared for. I've been "stealing" this soap from the bathrooms in the hospital and smell it whenever I'm feeling anxious. Sure enough, it works. Every. Single. Time. Now, of course, what kind of sick and messed up person gets comfort from the smell of doctors? I do! Depending on the day, I either burst out laughing or into tears when I have to smell my soap because it is a little strange, but if it works I don't care how crazy it seems!

I'm learning that living with mental health issues is a struggle, especially when the medicine isn't working fast enough, but the burden of living with these issues can be lessened by learning how to cope with these issues in a way that works for you.

Again, thanks for reading! Hopefully these posts are sounding more positive!

Sarah :)

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.....