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 :)

Blessing In The Battle

July 2015

I'm not going to sugar coat anything: as of tonight, I am not doing well. I feel as if the depression has reached an all time low. The medicine my doctor was very confident in didn't work. While there has been a slight decrease in my symptoms, it was never consistent. As of tonight, I am weaning off that medicine and trying something new tomorrow. Today was a really bad day. I'll spare the depressing details but say that I found myself wishing none of this had ever happened. My pediatrician is at the same hospital and office building where my health story took place. Normally this doesn't bother me. In a weird way, I enjoy going to that hospital. It's pretty much my second home, and who doesn't like going home? I have good memories of when I brought cookies to all my doctors and nurses. I still laugh when I think about some of the funny antics of the staff there. However today was different. I was very anxious the entire time there. I kept having PTSD-like flashbacks to the countless times I went into that building sick and hopeless. Suddenly all those happy memories were gone and replaced by dark memories that make me want to run out of the building. That my friends, is what depression does to you. Wishing that it never happened to me won't do anything. It happened. Now I have to live with it. So instead of dwelling on the bad memories and experiences, I wanted to write a post to help me focus on the good memories and blessings that came from my health journey:

*My pediatrician, Dr. S., telling me that it was safe for me to ride all the rides I wanted to at Universal Studios when I had mono
*The percent of people who have died from C.diff is growing, but C.diff didn't kill me
*My first pediatric GI doctor, Dr. D.S., was a quirky little guy with a different personality that always made me laugh
*Going gluten-free and dairy-free has forced me to eat healthier (NOT a reason for going gluten-free though!)
*When Dr. D.S. ran out of ideas, he referred me to an incredible doctor
*This doctor, Dr. Di, gave me a feeling of peace and contentment after the first appointment that I had never felt before when leaving a doctor's office...and called my mom on Labor Day to check on me
*I was tested for Crohn's disease and cancer; both were negative
*Dr. Di's nurse, Nurse J., was easily reached and immediately on it when my mom called saying that I had pain under my right side
*Dr. Di referred me to a great surgeon, Dr. R.
*This surgeon, with his dress pants and scrubs, took my gall bladder out flawlessly and improved my quality of life

*Month by month, my level of nausea dropped, which also improved my quality of life
*Harry Potter is the best distraction
*I truly learned the value of good doctors in January 2012
*Dr. S. came to my rescue when my colon was impacted
*The floor I was hospitalized on was so bright and clean
*Dr. Di was my doctor again and put me on the right medicine that gave me back my life
*I was finally able to deliver my cookie platters and thank my heroes
*I was able to make the Build-A-Bear that I had been dreaming of
*Dr. Di correctly diagnosed and treated me when my stomach problems returned
*Throughout my journey, my faith in God grew tremendously
*I have a great relationship with my mom
*I have a cat who knows exactly when to comfort me
*I have family members across the country who prayed for me
*I have my best friend, Elizabeth, who is always there for me
*I have a sister-in-law who understands me so well and is always encouraging
*My health problems have lead me down the career path that I already love
*Being gluten-free has introduced me to two of my best friends
*My health care team is amazing; they're like family to me











"All our sickness, all our sorrow
Jesus carried up the hill
He has walked this path before us
He is walking with us still
Turning tragedy to triumph
Turning agony to pain
There is blessing in the battle
So take heart and stand amazed." 

Invisible Illness & My Journey

June 2015

Hello friends!
 Not too much change here unfortunately. I'm now up to 20mg of my "happy pills". I've had some occasional bursts of energy in the past few days so I'm hoping the next couple days/weeks will be more positive than the last. If I can stay distracted and busy, the anxiety and sadness doesn't bother me as much. The increased dose is definitely affecting my ultra sensitive stomach. I don't have much of an appetite and my stomach hurts almost constantly. I've been using my previous techniques to help relieve this annoying side effect.

My main purpose for writing this post is to release some thoughts and feelings that have been going through my mind lately. If you see a picture of me, you would never guess that I have four chronic digestive disorders, depression, anxiety, and a touch of PTSD. A picture doesn't show that my small intestine can't absorb gluten or that my colon randomly pinches and gives me pain. You can't tell from a picture that the inside of my stomach is inflamed and I have low stomach acid. You also can't tell that my entire digestive track moves so slowly that I never feel hungry or that I don't have a gall bladder. You definitely can't tell from a picture that I have low serotonin levels in my brain. I have what is called an Invisible Illness, and multiple of them. Just because I look healthy and happy on the outside doesn't mean that's what is going on inside. A popular quote tells us not to judge others because we don't know what battle they are fighting. Since I've gotten sick, I've been more observant about this and am trying to be less judgmental of others. Just because these illnesses are invisible doesn't mean they can't be talked about. I'm a big fan of spreading awareness about my conditions. My motto is, "If you got it, flaunt it. No shame." There is no reason why I should hide what I've been through and what I struggle with now. I know writing this blog has been able to help others who are going through the same thing, and I'm beyond thankful that I have the opportunity to do this.  

Since all my health issues are invisible, it can be easy to be occupied with the present and not the past. It's been almost three years since I was finally healthy in August of 2012. A lot has happened in those three years. Yet there are daily reminders of my health journey everywhere. I have four scars on my stomach from my surgery, my mask from the surgery is hanging in my room, my artwork with prescription labels is also in my room, and I always sleep with my teddy bear dressed in scrubs. All these reminders are so familiar to me now. However, last week I was going through one of my dresser drawers when I found my collection of hospital bracelets with my name, age, DOB, and doctor's name on it. I was already having an emotional day, and this tipped me over the edge. My mom came upstairs to find me surrounded by these paper bracelets and sobbing. I felt like I had finally moved past everything that had happened to me and it all came rushing back. All these images flashed through my mind of me sitting in freezing cold hospital waiting rooms for a test that might give me an answer to what was wrong. I saw myself reading Harry Potter while dressed in nothing but a hospital gown waiting for my second endoscopy and first colonoscopy. I remembered when I got sick the second time around (after being healthy for eight months) and reading a book about British monarchs once again dressed in a hospital gown and waiting for my third endoscopy and second colonoscopy. It's no wonder why I feel I have post-traumatic stress disorder. Don't even get my started on the trip to hell and back when I went to see Dr. Satan in Iowa City. There are "triggers" that get my mind fixed on that nightmare, and I can't do anything to stop that. Don't get me wrong, there are a million positive blessings that came from my health journey, and I thank God for them all the time. Looking at the facts though, there are memories and aspects of my health journey that cause emotional distress when I dwell on them. I don't know what causes this or if it will ever go away, but I think of my health journey as an ever-present companion that I carry with me, for better and for worse.

Thanks for reading,
Sarah

Follow Up: Where I've Been & Where I Am

June 2015

Hello again friends and blog followers! I've decided to write another post about my newly diagnosed depression and anxiety, not because it's a fun topic, but because writing allows me to express my thoughts and feelings in ways that I most likely wouldn't do in a conversation. Let's start with an update on how I'm doing as of today. I've been on my medication for three weeks tomorrow (Thursday). The dosage was increased on Monday. This medicine is semi-helpful. The need for massive amounts of Miralax has decreased and the pain from the gastritis flare up is gone! In my last post I mentioned how the medicine was giving me anxiety attacks. While these attacks still come, they don't last as long and aren't as frequent. I've even been able to distract myself when attack helps (usually by looking at pictures of those adorable Royal babies!) so I don't need to reach out. Unfortunately, the medicine is not helping with the fatigue, muscle aches, joint pains, and depression. My doctor increased the dosage in hopes that a higher dose will help with these remaining symptoms. I've gone to the gym every day for two weeks (I did skip a couple days and walked around the lake with my mom, but that still counts as a workout!), which helps energize me, stabilize my moods, and makes my muscles ache less.

Pedicures with mom

So how am I coping until the medicine starts fully working? To be 100% honest, it's the hardest thing I've had to do. I've been comparing this bout of illness with my previous run-ins with chronic illness. In the past, my health problem was physical. My stomach was upset. My body couldn't digest gluten anymore. My gall bladder was causing me pain. My abdomen hurt. My colon decided to be a pain in the butt (I'm cracking up at that pun by the way!). My stomach was inflamed and full of bile. All physical problems. During all of my previous health issues, I've "still had my brain", for lack of better wording. Even though those problems sucked, I was able to think clearly and choose to see the positive. With mental health issues, I don't have that ability. As much as I try and as much as it's pointed out to me, it's hard to see the bright side. It's all due to the chemical imbalance, not something that I can control. That adds an element of frustration to all this. I am BEYOND THANKFUL for all the family and friends who are supporting me and praying for me. As I said before, this is something I cannot fight alone, and I need every person who is willing to go at this with me. As always, my mom is extraordinary. She gets up at a very early time when I have to work in the mornings because my anxiety tends to be worse when I have to get up early. Being alone and in the dark also makes the depression and anxiety worse so my mom hangs out with me before I fall asleep. She's always doing fun things with me and nice things for me, and I'll never be able to thank her enough!

Awareness Art

   When I'm not working or interning, I try to stay as busy as possible in my free time. I do fun things with my mom and my best friend Elizabeth. I'm re-watching Grey's Anatomy, scrapbooking, creating art projects, and reading the Harry Potter series for the fourth time. In my older posts I talked about bringing a Harry Potter book to the hospital and doctor's offices. The Boy Who Lived and his brilliant creator, J.K. Rowling, are successful again in transporting me to a different world. When I'm feeling anxious and/or sad, I pick up my book and my mind is taken away from the demons that are inside. Most of the time I'm so drop dead tired that I go back and forth between watching Grey's Anatomy and reading Harry Potter; I don't have much energy to do anything else.

Best therapist: cat and
Harry Potter!

So that's where I am now. Some days are better than others. Some days start off well but come crashing down later on. There's no way to predict or prepare for how a day will turn out. The only thing I can do is take each day step by step, lean on the support from family and friends, and trust in God.

Next I would like to share some interesting things I noticed before I was diagnosed, when I was still in college and living in the dorms. I brushed it off thinking it was because of finishing my freshman year, but now I realize that what I'm about it talk about was related to the depression and anxiety. There were many nights where I would be taking a shower and then suddenly freeze. Nothing was bothering me, but I knew there was something wrong. Finally I would come to my senses and get out of the hot water. It was weird, but I didn't think anything of it. I figured I was tired and my brain was stuffed with information. Another weird thing, and this sounds weird, was my eyes. I've always liked the color (green, NOT hazel, mom!!) and shape of my eyes, but I noticed they looked different when I took a selfies/SnapChats to send to friends. It startled me at first when I first noticed it, and I still notice it now. I finally figured out what the strange look was: empty. At the hospital where I work, I've interacted with patients who are depressed, and I see the same look in their eyes. Thankfully my depression isn't as severe as these patients, but the empty look scares me sometimes. I've gotten pretty good at faking that everything is all sunshine and butteries so it can be hard to notice this. *FYI: I would appreciate it if all you lovely people didn't get uncomfortably close and stare into my eyes...if you can resist the temptation :P* Anyways, I noticed these two weird "symptoms" before I put anything else together, but now it's reassuring to know that there's an actual real reason for all of this.

And there you have it: a peak at where I've been in the past and where I am now. Hopefully the next follow up post will have more positive vibes to it!

Thanks for reading and stay tuned,
Sarah

Where My Demons Hide: My New Battle

May 2015

Hello friends and blog followers! It's been quite a while since I last posted on here; I've been busy! Here's a quick update before we dive into this post:

I just finished a great first year of college! I am studying Dietetics and Child, Adult, & Family Services, and I absolutely love it. I've met some incredible people and learned a lot. It took me a while to adjust to living away from home, but I finally got the hang of it. I'm already excited for the Fall 2015 semester to start!
    I had the opportunity to go across the pond to England over spring break with my English class. I had so much fun! England has so many gluten-free options, and I didn't even get "glutened" on the trip. My class and I went to Exeter (southwest England), Dartmoor, and London. It was amazing to see all the famous landmarks that I've dreamed of seeing since I was little. This trip was very triumphant for me; I was able to prove to myself that my health can never hold me back from doing anything.

    I'm spending my summer working at a hospital as a Diet Clerk. I really enjoy my job, and I like the hospital environment. As morbid as it may sound, I feel so comfortable being in the hospital and around sick patients, doctors, and nurses.

So that's what I've been up to since my last post. Now to the actual reason why I'm posting. Most of you have read my previous posts and/or are familiar with my very long health history. Writing this blog was a therapeutic way to accept what was happened to me and learn to appreciate all the blessings that came from it. If anyone is reading my blog for the first time, a quick overview is: celiac disease diagnosis in 2011, gall bladder removed in 2011, trip to hell and back (a.k.a University of Iowa hospital) in 2012, hospitalized in 2012, diagnosed with IBS and gastroparesis in 2012, healthy in August of 2012, sick again in April of 2013, diagnosed with gastritis in 2013, and healthy again in September of 2013. That's a lot of time spent not feeling well, hanging out with doctors and nurses, tests and procedures, and a lot of health conditions to manage. A completely reasonable question to ask would be, how did you cope with all that?! All my strength and energy comes from God, and I put my trust and life in His hands all the time. God has blessed me with supportive family members and friends who have helped me survive. He has also given me the best medical team anyone could ask for. He has given my doctors and nurses wisdom and compassion to help me overcome and live with all that I have. Even though I do have four chronic digestive disorders, I feel well probably 80% of the time. So why am I posting on here again? What else could I possibly have? Well, it turns out my current health struggle isn't a physical struggle.

After spring break, I began to notice some unusual symptoms that I naturally matched up with what was going on in my life. Fatigue. College is exhausting, but I felt more fatigue than usual. I dismissed this as returning from the trip of a lifetime in England, taking organic chemistry, and heading towards the last month of freshman year. Joint pain and muscle aches. I was running up to four miles, but minor injuries over time caused me to not be able to run as far anymore. I had twisted my ankle running and didn't let the injury heal properly before running again. That caused minor knee problems. Once again, I didn't rest and got shin splints. Weight gain. With gastroparesis, I feel no hunger and I feel fullness quickly. Because of this, I don't really eat that much. Add in my very active lifestyle and you get a skinny girl. Nothing had changed with my diet or lifestyle but yet I was constantly gaining weight and my clothes weren't fitting the same. Constipation. I like to keep this blog as honest as possible so sorry if constipation isn't your favorite topic. Due to IBS and gastroparesis, I drink a good amount of Miralax every day, but I noticed that the amount of Miralax I drank was getting outrageously high, over 50 ounces a day. Mood swings and sadness. I easily dismissed this symptom as a result of the fatigue, not being able to run, and all the frustrations that come with college classes.  I was also experiencing a gastritis flare which made the fatigue even worse and my stomach hurt every time I ate. How did I handle all this while attending classes, keeping up with homework, and studying for finals? Once again....God.

When the semester ended and I was finally able to decompress at home, the symptoms seemed to get worse. Of course, who wouldn't be exhausted after their first year of college? Who wouldn't feel sad because they missed their friends from college? I kept telling myself that this was all normal, and there was nothing to worry about. Meanwhile, my mom was keeping track of the symptoms I had reported to her and was looking on the Mayo Clinic's website. All the symptoms in bold above matched perfectly with the symptoms for hypothyroidism--a condition where the thyroid gland doesn't produce enough hormones. I have been seeing an endocrinologist since the summer of 2011 when my first pediatric GI doctor did blood work to determine why I wasn't feeling better. My thyroid levels have been on the low side of normal but nothing to worry about. Hypothyroidism runs in my family and is common in people with autoimmune issues, such as celiac disease. I just so happened to have a check up with my endocrinologist coming up. I was starting to feel miserable. The fatigue and sadness were really bringing me down. I had lost interest in doing anything; I just wanted to lay in bed. The appointment finally arrived and I presented all my symptoms to my doctor, who ordered seven blood tests. My mom and I anxiously awaited these results. We had already self-diagnosed me with hypothyroidism and now we just waited for the blood work to confirm our diagnosis. The blood work came back the next day but was a major shocker. Everything was normal. No thyroid problems whatsoever. I immediately started to freak out because I figured there was another worse problem. WebMD came up with lupus, fibromyalgia, and the plague, just to name a few terrible diseases. My mom made an appointment for the next morning with one of the pediatricians who helped me when I was sick. My usual doctor, Dr. S., was on vacation but Dr. El., another great doctor in the same practice, could see me. I went to the appointment expecting a few hours of blood work, x-rays, and who knows what else. After all, lupus or fibromyalgia would probably be tricky to diagnosis. Dr. El. went over the blood work from the endocrinologist, asked a series of questions, and did a physical exam. When he said that he wasn't going to do any more blood work or tests, I didn't panic because he's so thorough that I knew I could trust him. Dr. El. then explained how the symptoms I had been having were also the same symptoms for low serotonin levels. Serotonin is a chemical in the brain that helps with moods/happiness. The more Dr. El. talked, the more and more I realized what I had been struggling with some mid-March. I finally realized the emotions I had been struggling with weren't normal. It wasn't normal to cry for no reason in your room for two hours. It wasn't normal for something totally random to make you burst into tears. It wasn't normal to feel so much anxiety that you can't breathe when someone doesn't text you back right away. While sitting in exam room with my mom and Dr. El., I finally felt relief. I couldn't stop the tears from coming. I wasn't crazy. There was nothing physically wrong with me. Dr. El. explained that depression and anxiety is very common in people with a history of GI issues and "responsible students". Dr. El. prescribed an antidepressant that is commonly used to treat depression and anxiety. He warned me that I could endure 7-10 days of feeling worse before I could feel better, and it might take anywhere from 2-6 weeks to start seeing a difference in how I felt. I'll skip the fascinating science of the medicine and get right to the main point: I was diagnosed with depression and anxiety on May 21, 2015. I am depressed.

The medicine is being a pain in the butt as it is making me feel worse. So far I've woken up with anxiety attacks twice, had anxiety attacks throughout the day multiple times, feel like crying more, lost my appetite, feel dark inside, and feel even more tired than before. These anxiety attacks are really starting to take their toll on me. Describing one of these moments is difficult to put into words. During an attack, I often feel very shaky, scared, and helpless. My stomach is instantly upset, and I feel like throwing up. It's hard to focus on anything, even though I try to force happy thoughts into my mind. Sometimes one of these attacks is brought on by a thought about the future, but most of the time it happens for no reason. It's always worse when I'm alone and don't have anyone to distract me or calm me down. Occasionally the feelings will fade as quickly as they were brought on, but other times some of the feelings stay with me for the rest of the day. Tomorrow marks one day on this tiny white pill that makes me miserable, and I can only pray that I will start to see some improvement soon.

I do not like the label of being "depressed". I prefer to call it chemically challenged because that is actually what is happening inside my brain. This depression and anxiety isn't my fault; it's basically a side effect of my digestive issues. I definitely do not like the social stigma that goes along with not just depression and anxiety but any other mental health issue. When you think about it, the only difference between depression and celiac disease (or any other disorder I have) is where in the body something isn't right and what it affects. Our society acts as if depression and anxiety are unspeakable when in reality it's common. I may not want to openly discuss this new health issue at the dinner table because it can be difficult to accept and understand let alone talk about it. However, I wanted to write this post for several reasons:
1) Therapeutic: as I said earlier, writing this blog really helped me recover mentally and emotionally from everything that happened to me with my health, and my hope is that writing this post will do the same.
2) Knowledge: I feel like I'm hiding a dark and dirty secret sometimes by not talking about this diagnosis. While I would prefer to not discuss it in depth in person, I do want to be 100% honest whenever I can be.
3) Awareness: depression and anxiety are more common than people think. Everyone has heard of it but knowing someone with it brings it closer to home.
4) Prayers: if you're reading this and feel inclined to do so, please pray for me. This is not going to be an easy battle to fight, and I definitely can't do it alone. I have seen nothing but support and love from my family and friends, and I am beyond grateful for that.

Thank you for taking the time out of your day to read this,
Sarah 

Final Post: Acceptance

Epilogue

I officially "called it" on Labor Day of 2013. I had a lot of manage, but the key was that I could manage all the medicines and diets. I no longer struggled daily with that horrid gastritis pain. Once I felt 100% better, my last year of high school began to fly by. The math class at the community college presented its challenges, but it was a great way to prepare me for college academics. In October of 2013, my mom and I were the (very proud!) co-coordinators of Making Tracks for Celiacs: Des Moines--the first ever celiac disease awareness walk in Des Moines. After months of planning, the walk was a huge success! My mom and I were interviewed in the Des Moines Register and KCCI Channel 8 broadcast live from the walk and interviewed me. Over $4,000 was raised and 150 people participated. It was a dream come true! The year of 2013 ended and 2014 began. This was going to be a big year for me: I would graduate high school and go to college. I was very thankful when I finished high school for several reasons. First, I made it a whole year of high school without something medically bad happening.
 Freshman year: mono, c.diff, and celiac disease.
 Sophomore year: surgery, Iowa City, hospitalized, IBS, and gastroparesis
Junior year: gastritis
Understandably, I was quite intimidated by what could possibly happen during my senior year! Thankfully, nothing happened. I was proud of myself for finishing high school on time and with good grades.

Where Am I Now?

These days, I am feeling great! I will occasionally have a day where I do everything I'm supposed to, but I just don't feel good. That comes with having four chronic digestive disorders. However, I would say that I feel well 95% of the time! My diet is still restricted but much less than what it used to be. I currently avoid gluten, dairy, meat, bananas, coconut, tomatoes, and onions. As for medicines, I still take amitriptyline and prescription prevacid. I have completely weaned myself off of cholestryamine because it was making my stomach hurt after I took it. Not living with all the nasty side effects has greatly improved my quality of life! I also take a vitamin, probiotic, Miralax, and peppermint oil capsules.
 I can run anywhere between three to four miles three times a week, and I still enjoy it just as much as I did when I started. To date, I have participated in seven 5k races.
 This summer, I am working (still at the daycare!) and running a lot. I recently returned from a trip to Texas to visit my cousin and her incredible family. My cousin has her own health issues and has been a constant source of friendship at support! I will turn 19 next Sunday, and shortly after that I will embark on my latest adventure: college. I will be attending Iowa State University for dietetics. I plan on becoming a pediatric clinical dietitian after I graduate. Just the thought of having the opportunity to help kids who are sick and in hospitals fills me with joy. Going to college is a big step for me, and I would be lying if I said that I wasn't nervous. In addition to managing everything that is college, I will be bringing along my restricted diet, medicines, and health problems. I believe that God will give me the strength to manage all of this, just like He has given me strength to manage chronic illness at a young age.

Final Glances

Before I publish this last post, there are a few more things I want to say. My health journey was unexpected, chronic, complicated, and rough. At the same time, there are so many blessings that have come from it.
My faith: this is something that has definitely increased since I got sick. I have a small notebook filled with encouraging verses from the Bible that I read every day when I was sick. It was amazing to experience the amount of peace and comfort I got from these verses. Multiple times one of these verses would "randomly" pop into my head in a time that I needed to hear something encouraging, comforting, or reassuring. I have now personally seen how God works "all things for the good of those who love Him" and that He does have a plan for us. God has placed incredible people in my life, and it's amazing to think about how His plan has played out through all sorts of people. All of the blessings/lessons I've learned listed below would never have occurred if I hadn't gotten sick. Yes, living with all that I have and experiencing everything that I've been through was not pleasant. Do I wish it would have never happened? No. If I could go back in time and magically prevent all of this from happening, I wouldn't! As I mentioned above, I want to be a dietitian. I would never in a million years have decided on that career choice if I hadn't been sick enough to require a dietitian's help. I would have probably ended up as a speech language pathologist or a personal trainer, but I am SO excited for my future as a dietitian! I love how I can finally see a little bit of God's great plan for me.
My family: I have formed very close relationships with my family, especially my mom and grandparents, during my health journey. My mom was (and still is) my constant source of support. If I don't feel good or something isn't going right, she is the first person I turn to. She can always cheer
me up and make me feel better. I'm so thankful for the memories, both good and bad, that we've gone made and the experiences that we've gone through together. I know that I wouldn't have made it out of my health crisis without her! My grandparents have also been so supportive. It started with them baking me gluten-free treats and making family gatherings "Sarah Safe". Since then, my grandpa and I text each other every night and we all enjoy being together. Both of my grandparents are inspirations to me; they've been through so much but yet they are the kindest people I know. I've also deeply bonded with my precious cat, Oliver. He's always been my baby, but when I got sick he became even closer to me. He always comforted me when I was upset by purring, rubbing his face against my hand, and rolling around on the floor to make me laugh. He even kneads his paws on my stomach when I don't feel good! I have also developed close relationships with two of my cousins, Lisa and Leda. We don't live close, but we are certainly close at heart! All three of my dad's siblings have also showed so much care and concern through my health journey. I never felt like I was going through this alone; I could always feel the support and prayers that were coming from my spread-across-the-country family!

My friends: When my health reached the point where I was always canceling plans with friends because I didn't feel good, only two of my friends stuck by my side. Elizabeth and T. Both of them always asked how I was feeling and were very sensitive to my health. They didn't seem to mind if I canceled existing plans because a doctor appointment or test came up. I've been friends with Elizabeth since I was in kindergarten, and T. and I have been friends since first or second grade. Both of them have secured a place in my wedding :P The family that I babysat for have also proved to me huge blessings. Those kiddos were the perfect distraction for me when I needed one. Erika, their amazing mother, always filled me with hope and encouragement when I was sick.
My doctors and medical team: I talk a lot in my blog about my doctors, nurses, and other medical professionals I've interacted with. I think if I would have been younger or older, the medical staff I had wouldn't have mattered as much. However, I was at such a vulnerable age: 15-18 years old. I spent more time in waiting rooms and with the doctor than I did at friends' houses. Therefore, my nurses and doctors became my friends. I now consider them family. Each doctor has made a difference in my life and for that I will be forever thankful. Of course, there's always that doctor. Even though Dr. Satan did absolutely nothing to improve my quality of life, he did teach me things. He taught me to appreciate the good doctors. He taught me to advocate for myself, even if the "doctor" didn't believe a word I said. He taught me how to stand tall and strong in the midst of a raging storm. This doesn't mean that I speak well of him because I had to learn all of these things thanks to him. When I look back at my time with him, it doesn't go well for me. I know he has affected other patients in a similar way. There are days when I want to report him to the Iowa Board of Medicine or blackmail him, but then I remind myself of two things my mom told me: "God will take care of people like him" and "The best revenge is you feeling better because of doctors in Des Moines."
 My mom and I regularly get together with Nurse T. for lunch or walks. She is such a good friend and an inspiration. My friendship with Nurse T. is the perfect example of one of the greatest blessings that has come from my health journey.

Facts and Figures:  My mom finds these figured depressing, but I find them interesting and somewhat amusing. From 2010-2013, I visited the hospital 105 times. I had five ultrasounds, seven x-rays, three endoscopies, two colonoscopies, one surgery, and nine nuclear medicine tests. I saw 15 doctors from 11 different specialties.
Thank YOU: When I started this blog, I didn't know if it would be successful. I figured the only people who would read it would be my family and friends. As of today, however, over 3,800 people in 12 different countries have read this blog! Thank you for showing interest in my blog. As I'm about to mention, writing this blog has been crucial for me to move forward from my health journey.
Things I've Learned: I have learned that nothing tastes as good as feeling good, sometimes all you need to do is read a Harry Potter book, it's okay to cry, peppermint does wonders on a troubled tummy, never tell a sick person how terrible they look, understanding the family tree of the British Monarchy is a great distraction, cats provide great comfort, some GI doctors look up so many buttholes that they become one, not every doctor will be as great as mine so I thank God for my doctors, coffee is a laxative, gluten can be hidden in anything and everything, people will say stupid stuff because they are ignorant, a walk around the lake can mentally transform a person, and everyone has a story, baggage, and pains that they will always carry with them.

When a traumatic event happens, there are five stages of mourning: shock, denial, anger, depression, and acceptance. As I look back on my health journey, I can clearly see the times when I went through these stages. I can also see when I went through these stages after I felt better. The psychological recovery after the physical recovery of chronic illness is just as important. It took me a while to learn how to function without feeling sick. After I discovered this, I had a hard time accepting and moving on from my recently won battle. When I started this blog, I just wanted to share my story and maybe help some people. I had no idea that writing my health story would be such a cleansing process. I had to dig down deep and re-live the past few years. This was not easy to do, but after I published each post, I had this wonderful feeling of peace. Yes, bad things have happened to me but it's okay. I survived, I am alive, and I am thriving. I am living the life that I dreamed about when I was sick; I can run, work, and do what I want to do. I'm even going to college soon! I will never be able to forget everything that has happened to me, but I've come to the point where I don't dwell on what has happened. I'm a total sentimentalist so my health journey will always be in my heart. I am not the same person that I was before I got sick, and I would like to think that my health journey has made me a better person. I'm so thankful that I started this blog as it has given me the final stage of the grieving process: acceptance.

After
August 2014

"I have fought the good fight; I have finished the race; I have kept the faith." -2nd Timothy 4:7



Before
August 2010



 

 

 

THE END!!!!!!!!!

 

P.S. If you would take a few minutes to give me some feedback, that would be fantastic! Please leave a comment below with how you discovered my blog, what made you read it, and your thoughts, comments, or questions. Thank you!! :)

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!!