“My name is Courtney; I am 20 years old. I was always active in sports and school activities. I grew up in a small town in the south. My parents are Shane and Jenny. They raised us in church, and set great examples of what true love is. I received Jesus as my savior when I was 13 years old. I’m the oldest of three girls. My youngest sisters are Hannah, 17, and Morgan, 14. My sisters and I have always been really close, but with the hospital being our second home these days, it’s been hard. Since I’ve become sick it has all taken an emotional toll on everyone in my family. I’ve always considered myself a daddy’s girl, but over the past few years me and my mom have definitely become very close. I consider her my best friend, and I hope one day I can be at least half the woman she is.
When I got sick my life became separated into a ‘pre-sickness’ me and a ‘post-sickness’ me. Nothing felt real, even years later. In 2015 my world felt like it completely stopped. I felt disconnected from reality, grieving for my old life, while simultaneously trying to get it back, and somehow, I didn’t realize life was going on without me. I didn’t want to accept the reality that what I have doesn’t have a cure. There’s no medicine, no procedure that can make this all go away. My parents had always raised me in church, but the trials you hear people talking about, you never think something like that will happen to you. You think God would never do something like that, He’s a God who loves, a God of goodness and mercy. But He allows us to go through things to strengthen our faith, to encourage someone else. And that is why I am sharing my story.
It all started in 2014, I was a sophomore in High School. I started having these excruciating migraines, so we went to see a neurologist. He ran an EEG and did some blood work. The tests came back that I had some seizure activity, lesions on my brain, and my ANA (antinuclear antibodies) were extremely high. He said that meant there was something autoimmune going on. He sent me to a Rheumatologist. She ran some tests, and basically told me I was just crazy and that all of my pain and symptoms were in my head. I can’t tell you how frustrating that was, knowing there is something wrong with your body but the doctor doesn’t even believe you. Needless to say, we found another doctor.
At the same time when I had all of these questions with no answers, God gave me something that has truly saved my life in more ways than one. Alex Higgins. I was a sophomore, and he was a freshman. We had band class together and he would always find some way to talk to me. He would hide my book bag, or put it on the top shelf because I’m short so I would have to ask him to get it. I thought he was so weird. But by the end of that school year, something changed. I didn’t want to get away from him anymore, I wanted to talk to him all the time. I invited him to my sixteenth birthday party. I took the invitation with me to school every day for a whole week, and on the last day of school I finally got the nerve up to give it to him, so I just handed it to him and walked away. I didn’t give him time to give me an answer, and we didn’t have each other’s phone numbers yet so I had no clue if he would even show up. But the day rolled around and there he was. I think I was talking to my friends when he walked in and I just left them in the middle of the conversation and went straight to him. The whole night went by and he finally asked for my number before he left, but then he didn’t text me for another week so I thought I put the wrong number in. But when I went to have some more tests done his mom saw the update on Facebook, so he texted me making sure everything was okay. I was so nervous, because I hadn’t told him there was anything going on with my health. But I figured even though I did not want to tell him I needed to lay it all out there. I made sure he knew I understood if he didn’t want to start a relationship. But he couldn’t have felt anymore opposite. He said let me know when you find out the test results, and just always remember God is good all the time and all the time God is good. I knew then that I loved him, and that God put him in my life at exactly the right time because He knew I would need him.
We saw another rheumatologist and she did some more blood work and diagnosed me with Lupus. Lupus is an inflammatory disease where the body basically attacks itself. I thought finally, after all this time we finally have answers and can treat this. But she felt like that wasn’t all that was going on, she was pretty sure she knew what it was but needed to send me to a cardiologist to be sure. She said it’s something she had only ever seen once in her career, and she said there were only six doctors in the United States who treated it, eleven medical schools who taught it, and that we would have to go out of state to see one.
July of 2015 I was diagnosed with Dysautonomia or POTS. A dysfunction of the nerves that regulate nonvoluntary body functions, such as heart rate, blood pressure, and digestion. A word I had never heard before and had no clue what it was. I remember the day so vividly. We had been trying to figure out for over a year what was wrong with me. Excruciating migraines, passing out, my heart would stop, extreme dehydration, very low blow pressure, high heart rate, unbearable stomach pain and nausea, seizures. There were countless tests that had been done, 5 plus doctors, blood work, EKGs, and finally we had an answer. The Cardiologist came in and said I have bad news and good news. The good news is we finally have a diagnosis, the bad news is there’s nothing we can do about it except try to control the symptoms. I burst into tears, I felt like a weight had been lifted because we finally had an answer, but at the same time I knew nothing would ever be the same again.
I had taken dance classes since I was little, I was in the marching band at school, I was also on the Jazz Dance team at my high school. I had always been so active up to this point. The disease just continued to progress. I ended up not only having to quit all of my activities, but I ended up being put on hospital homebound for the rest of my junior year. I felt so alone, and separated from everyone and everything that made me who I was.
My body progressively went downhill. I was having excruciating stomach pain, vomiting, passing out more than ever, and I had gotten to the point where I couldn’t eat anything. I had a doctor’s appointment with my cardiologist over the summer and he basically said you’re not going to be able to go to school your senior year, this disease has progressed too far and too fast. He even told me I wouldn’t be able to go to college. I felt defeated. I had all of these dreams and plans, but God had bigger plans for my life. After summer was over, I was determined to go to school for my senior year. I bet you’ve never heard someone wanting to go to school so badly, but I did. I just wanted to feel normal again. I made it halfway through the first day before I ended up in the nurse’s room with low blood pressure, high heart rate, and feeling extremely dizzy. I spent the rest of that year on hospital homebound. But I did get to walk across the stage with the rest of my class at graduation, and let me just tell you, that night was filled with so many emotions. I was so happy to actually get to be there. I was so thankful to accomplish something I had wondered and worried about so often. I didn’t know if it would even be possible for me anymore. After it was all over I was a wreck, I felt so heartbroken. I felt happy to have made it that far, but sad that I missed it all. I didn’t get to do any of the ‘senior activities’ with my friends.
That next year was one of the toughest, I ended up losing a total of 50 pounds. The stomach pain was the worst it had ever been, I wasn’t eating, I was having more and more seizures, and passing out. But through it all I felt such a peace from God that’s unexplainable. April of 2017, which was a year after I graduated, I began college courses online. I was determined to still get a degree one way or another. I wasn’t going to not try just because the doctors were telling me it wouldn’t be possible. November of that year began a part of my story that has strengthened and tested my faith more than I ever thought possible. The stomach pain continuously got worse and worse to the point where I couldn’t take it anymore. We ended up in the hospital for a week.
They ran some tests and said I had developed Gastroparesis due to my Dysautonomia. Gastroparesis (GP also called delayed gastric emptying) is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for an abnormally long time. Normally, the stomach contracts to move food down into the small intestine for additional digestion. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not properly function. Food then moves slowly or stops moving through the digestive tract. This then resulted in something called Visceral Hyperalgesia. Visceral hyperalgesia is an increased sensitivity to pain in the internal organs of the body, like the stomach, pancreas or intestines. My GI doctor said that I was so malnourished from not being able to eat and that I needed to have a feeding tube put down my nose and throat into my stomach. That was so hard for me to hear, I felt like my body was failing me and there was nothing I could do about it. But I feel like God put this doctor in my life to help me not only physically, but emotionally as well. He literally changed my life. When I came to him I was at my lowest point, both physically and emotionally.
I still remember the words he said to me at my first appointment, ‘If this doesn’t work, I’m not going to stop until I find something that does.’ Every week no matter how good or bad of a week it was he always had a giant smile on his face when he walked in the room, and he will never know how much hope that gave me. Without him intervening there’s a chance I would not be here today. I was slowly withering away pound by pound, and even though I was so scared what getting a feeding tube meant for my future, I am so glad he gave me the tools I needed to get my life back on track.
I was in and out of the hospital for weeks at a time from November-January. But in December they decided to switch my Nasal G tube, to a GJ PEG which would be long term. I didn’t really know how to process that, knowing that my body was slowly shutting down and no matter how hard I tried I couldn’t make it better. And even though I knew God was with me through it all I had never felt more alone. But I’ve come to know He uses every part of our story, even our pain. I was really nervous going into the surgery, but waking up was the scariest thing I’ve ever experienced. The monitors were going off and all the nurses and doctors were running in and out and I could hear them tell my mom and dad to stay calm because I needed to stay calm. My heart rate was in the 140s and my chest hurt so badly, I thought I was having a heart attack. I was so scared, I still felt almost paralyzed from anesthesia, I couldn’t speak to say anything to anyone and at the same time I was in more pain than I had ever felt before. I thought why did I do this, I feel worse than I did before. But then I heard Alex beside me praying, even though he says he wasn’t praying aloud. I could hear him praying to God, and I instantly knew it would all be okay. That night the nurses tried to get me out of bed and I ended up passing out and then puking everywhere, and what was supposed to be a 2-day recovery surgery ended up being a week.
In March of 2018 one of the six doctors that treats Dysautonomia moved from out of state to only 2 hours away from where we live. I knew that was God, He heard our prayers. He has been treating me now for 6 months, and I can’t even begin to tell you how grateful I am. My GI symptoms have begun to improve as well, thanks to my feeding tube. And just when I thought there might be a light at the end of the tunnel, we got more life changing news. I was seeing an orthopedic surgeon for my Kyphosis and a compression fracture in my back, and we were discussing the possibility of metal rod spine stabilizing surgery so he wanted an MRI. The results came back, and the doctor was the one who called and when the doctor calls you know it’s not good news. He said we have the results, but you’ll need to come in; I don’t want to discuss this over the phone. I was so scared, and praying like crazy for peace. It was a week before he could see me, and that was the longest week of my life. We went in and his nurse hands us a packet of all these crazy medical terms and says these are the results he will be in to discuss them with you. I swear it was hours before he finally came in, even though it was probably only 10 minutes. He said I had a lot of bulging and ruptured discs and very progressed kyphosis. Then he said they found a tumor. He said it’s in your neck, it was basically an ‘accidental finding’ because we scanned your complete spine. He said it’s tangled up in your thyroid and we’re hoping it’s benign, but there’s always a chance it’s not. He ordered a biopsy. I left there so confused and shattered. I felt like why God, why do you keep just piling on more and more, I don’t feel like I can handle all of the things you’re putting on me. The biopsy came back benign. But in the few weeks of not knowing if I had cancer or not, my faith grew stronger than ever. I know it’s hard, and people ask why do you still believe in a God who would put all of these bad and scary situations in your life. But it’s not His fault, and I don’t blame God for my illness. He gives and He takes away. But He never takes something without making something else beautiful from it. God loves to use broken vessels, and I believe He is using my story.
Looking back on this long journey thus far, it’s been hard, frustrating, confusing, exhausting, painful, filled with lots of heartache and tears. But through it all God has been with me, and I know He will never let me go. He wouldn’t have given me this mountain if He didn’t know I could climb it. And I know He is using me and my story to touch others. No matter how hard things get, no matter how bad the pain is, I know God is always on my side. I just keep believing and praying Jesus even if you don’t heal me I trust You, whatever Your will. I believe Your promises are true. My illness will never define me, it will never be my complete story, my faith, and testimony of God will be my story. ‘She is clothed in strength and dignity, and she laughs without fear of the future.’ Proverbs 31:25.”
This story was submitted to Love What Matters by Courtney Turner, 20, of Lake Hartwell, Georgia. You can follow her journey on Instagram here. Submit your story here, and subscribe to our best love stories here.
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