Showing posts with label The Medical Zebra. Show all posts
Showing posts with label The Medical Zebra. Show all posts

Wednesday, October 25, 2023


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 and debilitating. My pain is thankfully not constant however. It flares and the flares can last anywhere for a few days, to weeks, even months. In a flare, the pain tends to be constant. My triggers, can be from anything such as touching my neck, the back of my head, and ears. Brushing my hair, pulling it into a pony tail, or sleeping on a pillow, wearing a hat or hoodie can also be incredibly painful.

Today is International Occipital Neuralgia Awareness Day, but for those who have this condition or loves someone with this condition, ON is every day. There is no cure. That’s why awareness is so important on today and every day. 

For more info on ON check out The Facial Pain Association (FPA) and the Occipital Neuralgia Foundation


Occipital Neuralgia Foundation: onfsupport.org

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Friday, October 6, 2023

Facial Pain Awareness Month



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. 


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Wednesday, August 23, 2023

Scars To Your Beautiful




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 illness and I will always have some form of chronic illness. Maybe this is more about acceptance than it is about anything. Or maybe it’s just grief. 

In reality we cannot control things. And often we do not get to choose what life will give us. I understand that lesson. Truly I do, but that does not mean that I do not grieve sometimes what life decides to give me. I do not get to choose what battles that I will face or reface. That stings a bit. It really does. When you hear the words remission, you know that means that you understand logically a condition/disease can and might reactivate again. It’s just the way the human body is. You logically understand that, but sometimes emotionally you don’t fully grasp it. That’s me right now. I accepted my scars. And I struggle with the insecurities of those scars, usually daily. And I’m struggling with the idea of possibly having more scars. 

Some people say the scars we have make us beautiful because it speaks to our inner strength and resilience. Maybe that is true. And when I look at it fully, I do deep down believe that. Do I see them as beautiful, truthfully I don’t. Am I a beautiful human with scars, yes. 

Having an autoimmune condition is hard. It feels like your body hates you, or at least sees you as a threat, so it attacks itself. It’s hard because you wished so badly that your body would just listen to you, when you say, “hey body, it’s okay, we don’t need to hurt ourselves. We are not really a threat.” But no matter how hard you try to tell it that, it never listens to the pep talk. 

When I was nineteen, I realized what it was like to have an autoimmune disease. Lichen Planopilaris (LPP). It’s a form of alopecia that attacks the scalp and it is very painful. It was extremely hard to go through, and it caused extreme anxiety and depression for me. That was all worsened due to the fact I could see and feel the difference of what was happening to my body. Doctors don’t fully know why it happens, but it is believed that possible stress can cause it. But for whatever reason, the body attacks your hair follicles, and not only that it decides to leave you with painful and ugly scars. It did this to me. 

I remember when I went to a PCP to get a physical, I had been so nervous and embarrassed to tell the receptionist on the phone what was wrong so I scheduled a full physical. I remember when the doctor came in and she said with a chuckle, “So I hear you’re losing your hair.” I cannot describe how incredibly much that hurt and how ashamed I felt. Not to mention afraid. I literally withdrew into myself. Yes, medical trauma is real. Thankfully the dermatologist they sent me to was kind, gentle and understanding. I still look up to her to this day. 

I do not know why we as humans are ashamed about health conditions that happen to us. We are not at fault for what our bodies decide to do. I wished I could grasp onto that more for myself. To say firmly and actually believe it when I say, “Laura this is not your fault. This is not your fault.”

I often feel like an oddity. The sickie. The rare person that the medical world doesn’t always know what to make of. I often joke about it. I think I do that because when I joke about it I feel less afraid. But don’t be mistaken, I am afraid. It is a very heavy burden to be a person who comes down with rare and unknown conditions. It’s a heavy burden that I have been carrying for a while. And it is overwhelming some days. Very overwhelming. 

Before I sat down at my laptop to write this, I was in tears. And I cried through more than half of this, to be honest. I’m feeling a bit better, cause like my therapist often asks me when I am overwhelmed, did you write it out? This time I did. And I’m glad I did. But I’m also feeling better because I don’t feel as much of the need to hide my scars. I have LPP. It’s not my fault. It never was and it never will be. I am insecure because of it. It is very vulnerable to not feel or appear as what is "normal" for many people. It hurts your self-esteem. And anyone can feel that for whatever reason. 

While feeling overwhelmed about this condition reactivating, I do what I often do, I look for others who have it or a similar condition. Because I know that they too understand it. I googled “famous people who have LPP and alopecia” and many famous people popped up. Powerful and badass people. Many who are women. And one stood out to me and actually sang a powerful song. The singer who sang “Scars To Your Beautiful”, Alessia Cara, struggled with alopecia throughout her childhood and teen years. I related so much to her story. And felt incredibly seen and heard. And less alone. 

Health conditions often give us insecurities and leave us with feeling all alone, ashamed and embarrassed. Ones that leave the scars behind are also a reminder to us of what we have faced. Sometimes I think that is the hardest part. 

The perception of how others may view us is also hard. Though I have found those who are gentle and kind will see you for who you are. They view what we view as our imperfections, they see as just being human. I don’t think I will look at my scars as beautiful, but I can look at the person I am that has these scars as beautiful. Cause I am. And I know that.

"You should know you're beautiful just the way you are
And you don't have to change a thing
The world could change its heart
No scars to your beautiful
We're stars and we're beautiful"
- Alessia Cara


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Sunday, June 25, 2023

It's Not Fair


  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 been through a hell of a lot already. 

  I shared I understood the feeling well. I didn’t dive into my own reasons where I have also felt the same way, and had the very same thought. This conversation wasn’t about me, it was about holding space for this human who was wrestling with the tremendous fact that they have come down with a rare and incredibly painful condition. A condition that has changed life as they know it. 

  The young patient asked me how did I overcome this thought, of "it's not fair". I made it clear that I didn’t overcome it, but it did get easier, especially with time, I shared I found purpose in my pain. And then an incredibly tough questioned was prompted to me, what was my purpose? I choked up inside a bit as I shared that I had gone undiagnosed for nearly ten years. I was incredibly alone during that time. And very afraid because I did not know what was wrong with my face. Once I found answers and found others who understood, that also had my rare condition of Trigeminal Neuralgia, I found that I was not alone. Knowing that was a huge game changer for me. My purpose is to give back by volunteering and giving back that message that helped me beyond words, that they too, are not alone. And they can get through this.

  Hearing that question of what was my purpose in having such a terrible condition(s), really caused introspection for me the following day.

  I have been through a hell of a lot. A lot of those of us who come down with a chronic illness have already rode the rough seas of life. The last thing we need is a condition that impacts our life the way rare facial pain does. For me, for goodness sake I was born and raised inside a cult. The trauma that I have experienced is tremendous. Leaving at twenty-one was very traumatic in itself. Was it not enough to have survived a cult? Why did I too have to go through something as painful as TN? And why did I have to develop my rare facial pain within the cult?

  I was bullied within the cult due to having Trigeminal Neuralgia (although undiagnosed at the time), I was told I was lying, that I couldn’t possibly be in that much pain. That I was being dramatic. I have hurtful memories from the onset of my pain. 

  Trauma of developing my condition is three fold for me. The fact of developing such a painful condition, being not believed, and having the deep rooted belief planted by the cult that I should just toughen up and not have medical help. 

  The doubts that were placed from other’s words had a huge impact of me not seeking help sooner. And fear. So much fear. 

  The experiences of being forced to sing through episodes of facial pain, to the point that I had sweated through my clothes is still raw on some days. Or the memory of being told I looked like a monster as my face would contort through an episode. I was told to stop making those faces as I was embarrassing myself and embarrassing those around me. That one hurts. 

  These memories sting but they also anger me. Anger me for that little seventeen girl that was so scared and tried her best to hide the attacks. I should never had to feel that way. I should have never had to hide my pain. I should’ve been able to go through my attacks with no judgment. Yes, I feel anger on behalf of myself.

  Thankfully, leaving the cult, I only have loving and supporting people around me now. No bullies. Only believers in me. Believers that my pain, was and is indeed real.

  So yes, I do believe that it is not fair for anyone to come down with facial pain. Especially those who have already been through so much already. It’s not fair.  

  It's. Not. Fair.

  I want to hold space for patients who are feeling this right now. I also want to hold space for myself, to stand in my truth, that it was not fair that I also developed Trigeminal Neuralgia.

  Finding purpose in the pain…I am still finding purpose in my facial pain. Some days I feel it to my core, that there is indeed a purpose. Other days, I just feel like bad shit happens. And that bad shit, was me developing TN. All of those emotions are valid. And that is me being real.

 What I do know is my purpose in life is to live. To live beautifully. To live beautifully in spite of any type of pain. And I'm doing just that. 

 

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Wednesday, May 31, 2023

Angel



  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 would understand. She had accidentally messaged the wrong twin. My twin explained she wasn’t the one with TN and sent her my way.

  And so it began. Our friendship.

Angel was kind. She was also funny, blunt and would crack me up the more I got to know her.

  She had a personality that was beautiful and her smile was contagious.

  She came along in a time when I was struggling deeply with my health and was falling into a deep depression.

  My pain levels were through the roofs and Covid was taking over the world. Life was already heading fast to virtual living. And that wasn’t much different than how we were already living due to Trigeminal Neuralgia. We were the same age. Which was nice. We both had anxiety. And PTSD. And we shared some of our personal stories and supported each other.

  We were friends outside of TN. And at the time, I had been without a friend for a long time. We talked about everything.

  She was a person of faith and her faith was important to her. I was recovering from what my “faith” had done to me. She wanted to help me heal from that. Our main thing we bonded over was, music. Gosh she loved music. All of it but especially country music. Our favorite song though, was a contemporary Christian song. Tell Your Heart to Beat Again. It had been a song that had pulled me through so many tough days, after leaving the cult that I had survived. It had been a song that reminded her that she could face anything, even Trigeminal Neuralgia. It had been a song that had meant a lot to me before meeting her. Now when I hear it, I think of her.






  Makeup. Angel believed anything could be solved by putting your makeup on. She said concentrating on feeling pretty helped a lot with TN and helped with depression. I was afraid of putting on makeup because of the pain, she believed in not letting TN steal her makeup. I didn’t actually start wearing makeup again until this year. When I first put it on, I thought, Angel would be so proud and happy about that. And she would have said, “Finally girly!”

  Angel was one of the people that believed in me. She would tell me, beg me to consider volunteering to help others with TN, but she was also one to remind me to not let TN be my whole identity. She would remind me that I was a whole person regardless of TN and to celebrate life by living it.

 I remember one day we were planning on how to meet up with each other. She lived in New Mexico and I in Virginia. The plan was to meet each other when she was coming back from a trip to Washington DC. That trip didn’t happen due to Covid. I wish it had.

 She had wanted a pen pal and I had missed having one for a while. And so our few letters began. A letter here and there. Christmas cards. She would text me excitedly wondering when the next letter/card would be getting to her. And I would tell her it was on the way but didn’t know when. She would say it needed to hurry up. I would laugh. She cracked me up.




 She loved butterflies. Now when I see them, I think of her.

 She was a beautiful soul. She was the epitome of her name. Angel.

 Three days before she passed, she texted me.

She had told me she had something to tell me, I had been overwhelmed that week and was burnt out and so that text went unanswered with a plan to answer when I felt up to it. I never got a chance to reply. I will never know what that something was that she wanted to tell me. That is not a good feeling.

  Friendships, sometimes are not forever. Sometimes they are for seasons. But while you are in that season, they replenish your soul, they bring strength to you, remind you of your light and remind you to not ever quit. They can challenge you. To better yourself. Friendships can help you get to know yourself and grow. Angel’s friendship did all of that and more for me.

  May makes a year since she has been gone. And yet sometimes I still forget that she is gone. I thought about texting her the other day then realized that she wouldn't answer me.

  Many times I focus on all the struggles and terrible things I have experienced due to Trigeminal Neuralgia. But TN brought beautiful things with it too. It brought friendships to me. It brought an Angel to me.



Tuesday, March 28, 2023

When You Don't Feel Seen and Heard By Your Doctor: Part One

  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 challenges for those of us with chronic illness and specifically rare conditions, like facial pain, is not being seen and heard by the medical world. 

  It can feel very overwhelming when those who are trained, and are supposed to be the ones to help you, leave you feeling dismissed and not being taken care of. The physical side of things in itself is scary, but so is the complications that affect our emotional and mental health. It adds more worry, anxiety, and sometimes even causes a worsening of physical symptoms.

  I am in tuned to my body. I always have been. I know when things just don’t feel quite right. I can sense the feeling of worsening of symptoms, an approaching flare, and patterns. It’s my body. I have learned (and still am learning) to listen to what it is trying to tell me.
  

  I have learned a lot about the medical world. Specifically my conditions. In many instances, I know more about my own health conditions than a lot of doctors. It’s nothing new, to receive a puzzled look from a medical professional when saying the name of a medication and one of my conditions. Most days, I am understanding and compassionate that maybe they are not familiar with my condition, because it is, in fact, rare. So I take the opportunity to spread awareness and educate others about my conditions in hope that the medical worker will remember and be able to help the next patient that shows up with my condition. 

  But, it can also on some days, leave me feeling disheartened and even more of the odd one out when I sit schooling a medical professional about something like Trigeminal Neuralgia or Occipital Neuralgia. 




  But what about when you end up feeling not seen, heard and validated and even shrugged off or dismissed by your own doctors that treat your rare condition? When you’re left feeling that you have been left in the proverbial dust; left to treat your own condition without the resources that your doctor has? For me it’s hard to grasp the word and words to describe this feeling. Sometimes, it shows up in the feeling of disbelief, feeling dismissed, anger, sadness, and a stinging deep to my core, and ultimately feelings of hopelessness.

  Let me paint a picture of some scenarios that I have experienced.

  I have Trigeminal Neuralgia. It’s rare. I am aware of that. I know it’s extra rare due to my age of developing it at seventeen. My first neurologist almost completely dismissed this diagnosis due to my age alone, but ultimately sent for confirmation, via an MRI and a radiologist that he trusted. It confirmed Trigeminal Neuralgia on scan (I understand that is not always the case for everyone and they still have the condition). Even with that information, my neurologist at the time was reluctant about giving me the diagnosis, once again only due to my age. But because there had been (as he told me) an in depth argument by the radiologist that he knew and trusted he had no choice but to give me the diagnosis, though reluctantly. To this day, I am thankful to that radiologist I never met who advocated for me.

  My neurologist did treat me as if I had TN (which I did and still do). It still left me feeling stung though. I knew down deep that this had been the accurate diagnosis even before receiving it. Not being fully believed by your doctor, is well, not a nice feeling.

  I remember one of the medications he had given me caused anxiety and feelings of panic. I was scared to bring it up to him, because well there wasn’t a lot of trust there in the first place, somehow though, I dug deep (like I find myself doing often with chronic illness) and found the bravery to mention the anxiety and panic that had developed on the medication he had prescribed. I was dismissed as a young woman with emotions. I felt like crying in that moment. I remember telling him that this was not normal for me and this medication was scaring me. He told me I would be fine. Obviously, I didn’t believe him even though I wanted to hope that the medication would work. 

  In the end, that medication was discontinued due to not helping my Trigeminal Neuralgia . And yes, the anxiety and panic left with it. My mistrust in the doctor did not however.


  That experience has never left me. It still stings some days. I don't think some doctors think about the impact that they are leaving on their patients. Especially their rare and chronic illness patients. 

  Because we have chronic, rare conditions, we are more often not going to be believed rather than believed. It is very overwhelming at times. It wares on us. We have no control over our bodies and sadly we don't have any control over doctors believing in us either.

  If I had a message for doctors, it would be this, please consider the message you are sending to your patient, even more so to those of us that are zebras. Pause. Our zebra stripes are not going away just because you refuse to see them. Please take time to see the patient and the person sitting in front of you. Hear us. Believe us. See us. Fight for us.

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Thursday, March 2, 2023

Meet Me: The Medical Zebra

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) and Occipital Neuralgia (ON). 

  I am also considered especially extra rare due to developing TN at such a young age. Those under forty are rarer to get Trigeminal Neuralgia; I developed my disease at the age of seventeen. However, I didn’t gain my diagnosis until I was almost twenty-six. That was incredibly hard. After entering support groups online, and no longer feeling so alone, I decided in 2020 to start sharing my journey with TN on Instagram. By doing that I came across others like me, rare, and we connected. I never thought I would gain friendships from such a terrible pain. Posting and writing about my condition helped me tremendously; I was able to share truly what it felt like to hurt physically, emotionally and mentally from such chronic pain and one that many just have never heard about including medical professionals. 

  So why start a blog if I already have a space to share? Well, the answer is simple (like me), I'm someone who wants to feel free to share all their thoughts, without a word limit; I want to share openly and honestly about chronic illness life as a rare disease patient. So here’s to honesty, openness, no word limits and zebra stripes! 

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