Friday, April 5, 2024

Morgan's Story

Morgan stands embraced, between her sister and boyfriend.

  

  My name is Morgan Jones. Here is my story: I used to live in Illinois, a small town. I had everything a girl could want - two wonderful sisters, two wonderful parents, and a smile that lights up the world. All I could do was smile; I had a crazy imagination, and I wanted to be a model and Disney actress because I felt pretty when I smiled. I wasn’t afraid of anything when I was a child, except for bad storms and sleeping alone in the dark. I even had stage fright. When I was little, I would sleep with my mom because I was so scared. 

 My mom got me into music and the idea of being famous. She taught me how to dance and heard me singing every day in the bedroom. I wanted to help my parents because we were struggling at the time, and I wanted to get them a big house. 

  When I was around 9, I started losing my smile. My teeth ended up getting bad because I wouldn’t brush them due to the pain I was in. My mom took me to so many dentists, but none of them really helped. I remember one time I was told I couldn’t have chocolate milk. No dentist really knew what they were doing, and it wasn't my parents' fault; they didn't want to see me in pain, so they didn't make me brush my teeth, which caused tooth decay. 

  I remember how hard it was for my mom because the school kept calling about how I was getting bullied for my teeth. I would sit alone at the table, get ditched at football games and carvels, laughed at in school hallways, told I paid my friends, called a toothless freak, and even bullied about my hair at one point. I was bullied to the point where I lost my self-esteem. I still remember those words and the places where I was bullied. I wanted so badly to fit in that I made up a story about being a mermaid, which only caused more bullying. 

  Not only did I get bullied, but I also lost my mom at the age of ten. No girl should live without their mom; I would do anything to have my mom here. I know God wanted a pretty flower, so he picked my mom. 

  I kept getting infections in my teeth, fevers, headaches - you name it, I got it. My dad found a dentist who was willing to do surgery on me. He said I had to get all my teeth cut out. Remember I said I wasn’t afraid of anything? I wasn’t afraid of getting my teeth cut out; I knew they were going to put me asleep. I remember my mom told me to tell the surgeon my favorite TV show if I ever had surgery, and I would dream about it. I went three years without teeth, just music and me. I had my sister, my cousin, and her friends, so I had support. I got my teeth my freshman year, but the bullying got worse. There was a homecoming prank; I found it funny now, but it hurt me then. 

  My dad met a girl in an online young widow group. It made me happy knowing he was happy. It made me happy knowing I had a new best friend who constantly made me laugh and gave me a backbone. 

  For a long time, I wanted to start over. I started at Moorestown High School, and I was shy at first. I met two girls, and we became best friends. Carolyn, Mel and I wouldn’t trade those girls for the world. They said you only get two best friends. They became like family to me. We hung out all the time, I could call them anytime, they were the girls I could count on. 

  Around my senior year, I found out I had trigeminal neuralgia. This whole time, it was a disease that I didn’t even know I had. I went through every medicine, and I still get pain to this day, but I always come back from the spasms. I am an overcomer; I can overcome any obstacles that come my way. I am one of those girls who doesn’t give up. My boyfriend always encourages me that I am a fighter, and I have to stay positive. 

  I have great people here in Jersey who tell me how much I inspire them, how much they look up to me. I am not ashamed of my story because I know it’s going to help a lot of people. One day, I am going to have someone tell me that my story helped them. I hope I can change the world. 

  Please be kind, guys; there are so many people who need it. 

  Just because you have an illness doesn’t mean there’s no greatness in you; it doesn’t mean you are not a fighter because you are a fighter. Don’t give up; share your story and help many ❤️.

Check out Morgan's Etsy Store where she raises money to donate to facial pain awareness! 


Want to share your RARE story on my blog? 
Send me an email at lauriegirl.medicalzebra@gmail.com
Let's show the world our zebra stripes! 

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Saturday, March 23, 2024

Sharing My Journey with Rare Diseases on the "I Am Not My Pain" Podcast



2024 started out with a bang for this medical zebra! The first week of January, Part One of A Woman’s Journey Living with the “Suicide Disease”, dropped on Spotify and Apple Podcasts, with Part Two dropping the following week.

Towards the end of 2023, I had recorded a podcast with the I Am Not My Pain podcast with host Melissa Adams. It was a huge thing for me! And yes, it was indeed, my first ever time being on a podcast.

Melissa was wonderful to work with. She provided such a comfortable and safe space to share my rare and emotional journey with Trigeminal Neuralgia and Occipital Neuralgia.

It helped me so much to be able to share my story. I had no idea then how it would impact me personally to hear my own story. It was incredibly moving. I even cried listening to my story. It was incredibly validating.

I am so glad I leaned into the vulnerability to share my story with my own voice. I am also thankful for the support that I had when considering the idea in the first place. My twin sister (who had previously been a guest on the podcast), along with my partner encouraged me to be a guest on the I Am Not Pain podcast. They believed that I would enjoy telling my story and would help me to do so. And they were right. I am thankful I did.

It not only was healing for me to share my story, but it helped me be able to share with others who may not have fully understood my story and health conditions.I do not want to be seen as a victim for having these conditions, nor do I want to be seen as hero for having them either, I just, I just want to be - to be seen - and I was.

I felt incredibly more seen. I also hope it helps other patients with the same rare conditions, or chronic illness as a whole, to feel seen. And I hope they know that they are not alone.

After telling my story, I truly do not feel as alone. I think it was a huge moment for myself. To truly listen to MY story, I validated myself. And I needed to do that. 

Once again, thank you Melissa for allowing me the chance to share my story, it truly meant a whole lot to this girl! 


Check out both episodes below!


S3E27: A Woman’s Journey Living with the “Suicide Disease” – Part One 


Episode: https://bit.ly/LivingwithSuicideDiseasePart1


Listen on Apple Podcasts


Listen on Spotify


S3E28: A Woman’s Journey Living with the “Suicide Disease” – Part Two


Episode: https://bit.ly/LivingwithSuicideDiseasePart2


Listen on Apple Podcasts


Listen on Spotify 



Here's a bonus for you!

Lydia Joy Launderville (my twin sister) shares about dating while having chronic illness! It’s so good! 


S2E30:Dating With Chronic Illness - Part One


S3E1: Dating With Chronic Illness - Part Two



Learn more about the I Am Not My Pain podcast and the wonderful work that Melissa is doing, here

Please give the I Am Not Pain podcast a follow on Facebook and Instagram! Don't forget to check out the podcast too


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