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If you have followed my blog for a while, you probably are aware that I also suffer from bilateral trigeminal neuralgia and atypical face pain as well. I have been for fortunate with all of my health related issues in 2019, that the trigeminal neuralgia didn’t really flare too much this year. So, naturally, my body decides to celebrate the holidays with lupus and a trigeminal neuralgia flare.
I figured I was definitely experiencing the beginning of a lupus flare this last week. My joint and muscle pain was raging. I noticed my hair was falling out and was literally everywhere. My poor husband always seems to have long blonde hairs on his clothes and even his beard. While he always laughs it off as he pulls each strand off, I can’t help but feel embarassed by it still after these last few years of dealing with it. It seriously gets everywhere!
I awoke a few days ago to a giant lupus mouth sore in the roof of my mouth. If you are one of the unfortunately lupus patients who deal with mouth and nasal sores, you probably understand that whole frustration in itself. It hurts to eat anything. I have tried chewing on the opposite side of my mouth, but food still seems to hit it and it hurts so badly!
Last time I got them, I was prescribed a “Magic Mouthwash” concoction and it helped to numb out the pain pretty well, but I am out of it. I have been using Oragel to help numb the mouth ulcer and the teeth surrounding it because my nerve pain is extending into my teeth and ear at the moment. The Oragel does help temporarily but I have to reapply it often.
While that helps the pain in my mouth, the pain in my head and face was getting to be too much. I ended up going to urgent care yesterday. I was prescribed a prednisone taper and given a shot of toradol. Thankfully, the shot helped ease the extreme pain but by this morning, I could still feel the ache still lingering and nerve pain in my top teeth and jaw on that side. So I am hoping this taper of steroids helps stop both of my flares right now.
As I write this, it’s Christmas Eve morning. The holidays are usually stressful enough without us having to deal with health related issues, but when you have a chronic illness that stress can seem to double. I have about a million to-do things on my list, but here I am blogging to the people who understand me most instead.
Life gets hard sometimes…really hard.
The holidays can be a difficult time for many of us and I just wanted to take a few minutes to tell my readers thank you. Celebrating the holidays with lupus is a trying time for many of us. This blog has become my outlet for when I am feeling bad and the messages and emails I get from other lupus warriors are incredibly inspiring and appreciated. There have been times I have wanted to quit blogging or sharing my personal experiences with lupus and my many other health issues, but then I always get a message or an email that inspires me to continue. Messages from people who like me, are simply out here trying to live beyond lupus. Messages from people who are newly diagnosed or are scared they may have lupus.
These messages remind me of why I love my blog so much to begin with. It’s an outlet. An outlet that I normally wouldn’t have. A place that I can share what I am going through and hope that I help inspire even one person to keep fighting, even for that one day. I am a [somewhat] normal person, just a normal person fighting a battle from within my own body.
Even those who appear strong or have it all together are usually fighting a battle that many of us may never know or understand.
So, today I am going to count my blessings. The ones that may be masked behind my incredible pain and fatigue on this glorious Christmas Eve morning. I am going to thank God, the Universe, my doctors, my family and friends, my blog readers, my incredible body, and my even stronger mind. I thank them all for keeping me afloat when many days this year, I thought I would drown. Today, if only for today, I remain hopeful that life will indeed go on. A life worth living and a life worth celebrating.
So Merry Christmas Eve to my fellow lupus warriors. If you are like me and are celebrating the holidays with lupus, may you feel the magic of this beautiful day and see the beginnings of a new year filled with hope, strength, and good health.