“I know I’ll wither, so peel away the bark
Because nothing grows when it is dark
In spite of all my fears, I can see it all so clear”
So within a week, I’ve had some health ups and downs.
Last Monday, I had my follow up for my biopsy. Good news! It showed no cancer! I have other issues to tackle with why I had to have the biopsy, but at least cancer is currently off the table.
This Monday, I found out I have Trigeminal Neuralgia.
I had a very BAD end of last week, and then HORRIBLE weekend, and by Monday I knew I needed to see my doctor. I wasn’t sleeping (and am still not sleeping) because of how intense the pain is. To give you an idea of the pain levels: this disease is nicknamed the Suicide Disease, because people would kill themselves from the pain before anyone figured out what to do to treat this pain. It was hard to describe, but I read where someone described it as a combination of the worst migraine of your life and the worst toothache. I can agree and elaborate on this: The misery of the worst migraine, the insanity you feel with the worst toothache, and the feeling of someone using a hammer to break your jaw. That. That sounds like an adequate description.
I’ve built up a decent pain tolerance over the years, somehow. And this shatters that tolerance and leaves me curled up and miserable.
And, you guessed it – this is a manifestation of my disease. Sjogren’s decided to welcome more unpleasantness into my life.
But here’s the thing… Obviously, it hurts and it sucks. Yet, what seems to be bothering me even more, is that this is disease progression. This is me still not having anything under control. And it’s just a reminder of what my doctors have said:
There is nothing we can do to stop the progression.
You’re a ticking time bomb just waiting to go off.
I’ve had to explain to everyone in my life time and time again that I’ve been wanting to travel and do so much these past few years, because I want to do it while I can. There may come a day that I can’t handle my go-go-go travel style. What’s worse now, though, is that this day may be coming a lot sooner than I anticipated. My last three trips, I’ve had something come up health wise. Obviously, Reno was the worst. This all scares me.
I know my disease is still young and still evolving, but it’s so strong so early on. I can’t imagine what full-force will be like.
It’ll be a fun follow-up with my Rheumatologist, I’m sure.
But, I won’t let this stop me. I have plans, and goals, and dreams. Despite the brain fog, I will write. Despite the pain, I will progress. Despite exhaustion, I will travel. Until it is absolutely impossible, I will continue. Even though it feels like I am withering, I won’t give up. It isn’t in my nature.
Hopefully soon I’ll have more updates that don’t involve my body being stupid.
Hopefully.
~Angel
Misadventures of a Misfit 