Wednesday, October 25, 2023
Saturday, October 7, 2023
I May Be Rare, But I Am Not Invisible
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 years back called We Need a Cure for Trigeminal Neuralgia
“Trigeminal neuralgia, also known as tic douloureux is a neurological pain condition affecting the trigeminal nerve, specifically the fifth cranial nerve. There are two trigeminal nerves, and each nerve is connected to the brain stem. Each are responsible for the function and the sending of sensations to each side of the face. When working correctly, most people don’t think about, let alone know, what the trigeminal nerve is. And likely, most have never heard of the tongue-twisting named disease called trigeminal neuralgia (TN).
What TN does, is it tells the brain that everything hurts. Talking, eating, brushing your teeth, the wind, water, a gentle touch: everything that is an innocent and normal function or sensation on the face becomes a threat. The reaction is attacks (episodes) of sudden, sporadic and shooting chronic pain. Sometimes it feels like you are being electrocuted. Other times, it is a chronic, burning pain that feels like someone is putting a blowtorch to your face. Then, there are moments it feels like someone is punching you over and over again with an iron fist. Or you’re being stabbed with a dagger. There truly is no one way of explaining what it feels like… Except for the worst pain you could experience, times a hundred.
Trigeminal neuralgia is rare and that is another reason why not many people know what it is. The only ones who tend to know what TN is, are a) those who have this horrendous disease, b) those who love someone with it, and c) some medical professionals.
I’m one of those who has this painful condition. Like I said, trigeminal neuralgia is rare. For those under the age of 40, it’s even more rare. For some of us, it’s extra rare. My TN showed up at age 17. I can agree with the medical professionals: it is one of the most, if not the most, painful conditions known to mankind. I promise they were not kidding. I definitely wouldn’t recommend TN. I don’t have to know what it feels like to be struck by lightning; I have trigeminal neuralgia.”
Today is Trigeminal Neuralgia Awareness Day, but for me it is every day. I may be rare but I am not invisible.
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Friday, October 6, 2023
Facial Pain Awareness Month
Wednesday, August 23, 2023
Scars To Your Beautiful
"You should know you're beautiful just the way you are
Monday, July 31, 2023
They Told Me I Would Never Be Happy, They Lied.
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 whatever came to mind, we were also asked if we wanted
to read aloud our words. I’m a nervous, shy person, so although I often and am
able to muster up the courage to be brave and speak a lot of times, this wasn’t
one of the times. But I made up mind that I wanted to share my words
regardless. And so here it goes.
“I remember when I first left the cult. There was so much fear, confusion and really just the unknown laid out before me. I grew up in a world where there was nothing to be unknown, where everything was said to have an answer from the IFB (Independent Fundamental Baptists) to suddenly be thrust into a world that had no answers. It was an odd and scary feeling. The world I grew up in was so sure of itself. And hence I felt sure of myself. Like I said, there was answers for every question and those came from our leader, the Man of God, the pastor. Any question could be answered by him because God spoke through him to speak to us. But without him I had no answers to my questions. I always imagined, what it would be like to not have left the cult. What would my life end up looking like? Who would I end up being? And with even all those questions I have, I have an answer for them. I would have been the same as I was within the cult, having all the answers from the IFB God, but having no real answers for life. Because in a world where they said they had all the answers they only had IFB answers. A world that was said to have all the answers really had none. I was always in a world of the unknown I just didn’t know it at the time.
When I left the cult I faced the unknown on my own. At least I had the choice to decide what I wanted to make out of that unknown. It was my unknown. The cult couldn’t have it. My unknown equaled my future. And although there was many things I didn’t know, I knew that."
I still know that. I wished I could find the words to express the incredible feeling of knowing that I found freedom. I couldn’t know then how my life would be now. All the wonderful things I have experienced, the wonderful people that I have met and have become a part of my life. Something that never would have happened if I had stayed within the walls that I was born into. That is incredible to me. It also brings tears, because I lived within a world where I never chose to be - a world that was said to be safe, but only hurt me - a world that stole so much from me, things that I will never ever get back - a world that told me when I left that I would never ever be happy without them on the outside. It brings tears because I now know the real meaning of happiness and it never would have been found within their cult.
They told me my
future would never be happy. They lied.
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Sunday, June 25, 2023
It's Not Fair
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.
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.
Wednesday, May 31, 2023
Angel
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.
Angel. When I think about her I was always think of three things. Butterflies, makeup and how much I thought her name fit her.
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 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.
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.
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.
Friday, April 7, 2023
When You Don't Feel Seen and Heard By Your Doctor: Part Two
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.
With that diagnosis, there was a feeling of validation, and a reassurance that I could indeed trust my body, if only I would keep listening and advocating for it. My doctor also I believe with that test, learned to trust me too. And respected me.
What I have found though is pause, and try to communicate to the human wearing that white coat rather than just the doctor.
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.
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.