The Medical Zebra

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 ...

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...

Today is International Occipital Neuralgia Awareness Day!  What is Occipital Neuralgia (ON)?  “Occipital neuralgia (ON) is a condition in which the occipital nerves, the nerves that run through the scalp, are injured or inflamed. This causes headaches that feel like severe piercing, throbbing or shock-like pain in the upper neck, back of the head or behind the ears.” - The Facial Pain Association.  ON is rare, some numbers suggest 3 people per 100,000 develop it.  There is no cure.  A bit of my story with ON: I was diagnosed last year with Occipital Neuralgia (ON), though my symptoms first showed up in 2020. ON is very painful. My symptoms are electric like shocks and stabs to the back of my neck, head and behind my ears and tip of my ears. I also at times have a continuous burning ache on the back of my head and ears. My neck and back of my head feel like it is in a vice grip. I also have a crawling sensation. The pain level from ON can be very chronic at times...

October is Facial Pain Awareness Month! 💙 I have had facial pain for thirteen years now. Developing it at age seventeen (though I often wonder if I have been experiencing symptoms as young as thirteen), was a huge impact on me. It has not only caused chronic, at times unbearable pain, it has also affected me emotionally and mentally. Facial pain may be in the face and head but the whole body is effected. Facial pain awareness is needed not only for cures, but for others to understand the struggle that I and so many other rare facial pain patients go through on a daily basis. Having facial pain requires a strength that many of us do not realize we have until we start fighting this ongoing battle. It's a fight that we are not alone in.  I'm thankful for the facial pain community, you all have been a light to me on days when the pain felt like it would drown me. Finding everyone a few years ago was the game changer I needed. I love and appreciate each of you.  We are warriors....

  One of the things I feel that has helped me with my own battle with facial pain, is helping others. I volunteer with a nonprofit that supports patients with facial pain. I work specifically with supporting young patients under the age of forty. It's very rewarding to help others who are in the age range of myself when I first developed facial pain.    While recently doing my volunteer work, I was talking to a newly diagnosed patient. We were talking about the acceptance of having something that can’t be cured, having facial pain and chronic illness as a whole and how it is not fair. Especially for those of us that have already been through a lot in life. I agreed.    Some people may criticize someone for feeling that something is not fair. I do not think it should be criticized. I feel that it is one of the most human experiences, to feel that something like a disease, or health struggle is not fair. You know why, because it is not fair. Especially if you have...

  Many people don’t understand the depth of virtual friendships.  Virtual friendships are real friendships. Just because they come about from connecting with someone online doesn’t make them less of a friendship.     Those of us with rare chronic illness, our virtual friendships are formed from the chronic illness world itself. You connect with those who already understand what you are going through. These friendships are special. The chance of coming across someone in person that has the same rare condition, is rare like the condition itself.  Because of that, these virtual friendships are that much more meaningful and impactful. They touch your heart and life.   Angel.  When I think about her I always think of three things. Butterflies, makeup and how much I thought her name fit her.   We met through a support group for Trigeminal Neuralgia. The funny thing is she messaged my identical twin asking for advice and looking for someone who wou...

  In the world of medicine, healthcare professionals are taught this sometimes logical thinking when it comes to diagnosing a patient, ‘when you hear hoof beats, think of horses, not zebras.'  What this simply means is when a patient shows up with symptoms, even if those symptoms are more unique in nature, they most likely are not going to end up being a zebra and being diagnosed with a rare condition. However, what happens sometimes, some of those patients do end up being a zebra. Most often doctors focus solely on their patient "having" to be a horse and dismiss all their zebra stripes. This can lead to more misery, prolonged and worsening of symptoms. Emotional and mental agony can also occur, which is also known as medical gaslighting.   I understand what this feels like. I understand every part of this. I was never the damn horse. I was always the zebra.   For many years, I felt this way due to having chronic illness and facial pain. One of the many ch...

Blog Author, Laura (Laurie Girl)    Hey there, thanks for stopping by! Nice to meet you! Let me introduce myself! I often introduce myself like this, “Hi, I’m Laura!” What that all includes is I’m almost thirty, an identical twin, I am dorky as heck, I’m unique, I am a lover of all things llamas, alpacas, and cats. Okay I love animals (even if I am skittish around some). I'm a music fan. I love getting lost in a TV show, especially period dramas and romances. I enjoy reading (when I can concentrate). I love trees, the sky and nature. Getting lost in my own thoughts. I volunteer with a nonprofit that I am passionate about. I enjoy the little things in life.   Oh I forgot to mention, in the chronic illness world I am also known as Laurie Girl. Speaking of the chronic illness world…I’m part of it. And even more unique, I am a Medical Zebra. Yup, I am rare. I have chronic and rare diseases and conditions. Some of my main medical zebra stripes are Trigeminal Neuralgia (TN) a...