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 ...

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....

I wished I could put into words what it feels like emotionally and mentally to be a chronic illness patient.  Some days, it’s just a routine of taking your medications, going to your doctor appointments, pain, fatigue medication side effects etc. Some days it’s just normal to not be normal. Other days, like for me today, I’m crying.  I’m crying because yet again, I’m facing another health battle. There’s a sting to this battle though. Because I have faced it before and well, thought I had won. Even my doctors called me a success story. And even used my case at a teaching conference. I held on to those words and was damn proud of myself for winning against this yet another rare disease. And one that left me with visible scars and insecurities.  When you are a chronic illness patient, sometimes you get used to being sick, but please don’t mistaken that with being okay with being sick. Maybe some individuals are. Maybe I’m just not accepting of the fact that I have chronic i...

  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...

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...