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Showing posts from 2024

Serena's Story

Serena Huffine smiles with her hand propped  against  her  face. S he is  wearing a  black  blouse,  black  hair  band,  silver hoop  earrings, and  silver round glasses .   Hi, my name is Serena Huffine, and I'm 28 years old and live in the south-eastern United States. I had my first trigeminal neuralgia attack on September 1st of 2021. I was so scared in those first moments of having TN. The pain was so bad that I thought I had a brain tumor. Prior to my first attack, I had never heard of trigeminal neuralgia. I did a lot of research and began my tiresome journey of trying to convince doctors that I had this condition.    I went to the ER probably 10 times total before I received a diagnosis. I was dismissed by at least four medical professionals who claimed that I didn't have TN. However, I knew I did, simply because my symptoms were spot on and I knew I wasn't having migraines. Because I have bilateral TN on ...

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 ...

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

2024 started out with a bang for this medical zebra! T he 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 firs...