The Medical Zebra

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...

  Today is International Trigeminal Neuralgia Awareness Day! I have had TN since I was seventeen (2010) but did not receive my official diagnosis until I was almost twenty-six (2019). Because I understand such a chronic pain condition known amongst medical professionals as “the worst pain known to mankind”, and a condition without a cure, I know how important it is that we spread awareness for TN. I also understand how the lack of having a diagnosis for so long impacts someone, especially as a young patient. That is why I bring awareness, volunteer and continue to share my story. Today may be TN awareness day, but for those of us with TN, every day we are aware of it. Today is for the warriors who are fighting TN, the Survivors who have experienced TN and the Angels who have passed due to Trigeminal Neuralgia being known as the suicide disease. That’s why a cure is needed. So what exactly is Trigeminal Neuralgia (TN)? Here is what TN is in a nutshell from an article I wrote a few y...

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...

  I recently attended a workshop that the nonprofit that I volunteered hosted. It was a writing workshop and I had never done one before. So I didn’t know what to expect. I ended up enjoying it immensely.   There is something about hearing the words of other survivors that have gone through the same or similar things as you have. It’s incredible listening to their words as they read them aloud. It was emotional and empowering.   In the workshop it was suggested that we write something that came to mind by choosing one of the following prompts. Prompt One was “I remember when and I always imagined” and Prompt Two was “I don’t remember if, but I always imagined”, I went with the first one.   Now although I write sometimes, hence this blog, I don’t fully consider myself a writer. I have my moments where I have words that I want to share, so I do. I’m a sharer of words. Okay so maybe I am a bit of a writer after all.   After we were encouraged to write whate...

  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...

   Because I have chronic illness and rare conditions, I have to work with doctors a lot. I have had good experiences with doctors but I have also had some really bad experiences with doctors and the medical world as a whole. I often don’t feel heard or seen as a patient and as a person.    It is incredibly hard for me to learn to trust doctors. And even more so, to not lose faith in them, once I have learned to trust them. So when I find one that I feel seen, heard and validated by, I consider them rare. Almost as rare as my conditions. I value them. They are like the tiniest of lights in an often overwhelming darkness that is chronic illness.   But here’s the thing, those doctors, that I do trust, and have a good relationship with, have also gotten it wrong.   I feel sometimes that the look I receive from them is “Gosh how can this girl have so many mysterious symptoms? It’s probably just in her head”. Nothing that I haven’t quietly thought to myself, if ...

  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...