The Medical Zebra

  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...