Posts Tagged ‘sjogrens’

“Are you searching for purpose?
Then write something, yeah it might be worthless
Then paint something then, it might be wordless
Pointless curses, nonsense verses
You’ll see purpose start to surface
No one else is dealing with your demons
Meaning maybe defeating them
Could be the beginning of your meaning, friend.”

I’ve been spending a lot of time trying to figure myself out. I know what I want. I know that if I can work myself hard enough, I can have it.

But it’s been a little easier said than done when your body decides to be twice as tired as it typically is, and hurting in nice fun new ways that make doing pretty much anything impossible. Plus, I got hooked on Marvel’s Jessica Jones on Netflix, and had to get the first season binge watched in less than a week.

 Next week I’m supposed to see my Rheumatologist and it’s stressing me out quite a bit more than I’d like. I’ve had so much happen, so much disease manifestation and progression, that I don’t want to go hear whatever she will say about it all.

Plus there have been loads of other stressful things going on, and all around I sort of feel like I’m unraveling.

comeonkid

But, I’m still going forward with the things I want. I’m still trying to learn new things so I can make new things. I’m trying to get my body to a point it isn’t having a meltdown. I’m trying to keep up with Wandering NerdGirl and make it into everything I wanted it to be.

Mainly, I’ve been needing to write, which comes easier to me on some days than others. I was a writing machine, cranking out posts and chapters and everything for a little while. Then BOOM – I slow waaaay down. I’m trying to get myself back into the swing of things, but it’s been a struggle. I used to, before sickness and stress and life drained me of everything, be able to write write write until the only thing slowing me down was hand cramps. I’d fill notebooks and print hundreds and hundreds of pages. I wrote during and between classes in High School, and when I’d get home from school. When I was in college, I wrote before classes and between them, and even tried to sneak in some writing during classes. I used to write on work lunch breaks. I spent summers at my desk, writing for hours on end.

But then stress took over. And from stress sprung illness, a mighty beast even for me to deal with.

I’m trying, though. I’m trying as hard as I can to find a way to get everything I want from life. I’m trying to get the words to come even when I can’t form a coherent thought because the brain fog is so heavy. I’m trying to give myself things that help put me back into my head correctly. It just takes time.

I finished a chapter of my current WIP the other day, and I’m hoping to finish a chapter or two this weekend if I can push myself enough. We will see.

~Angel

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bowie

“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

I have been very, very cautious when it comes to thinking about what I want out of 2016, because last year as soon as I set my goals for the coming year, it all came crashing down around me: I was losing my job, my aunt was very sick, and then to top it all off, the stress triggered a bad flare in my body and I literally spent New Years in the bathroom vomiting and running a fever. The beginning of 2015 was a hard one. I didn’t feel like I achieved anything. I was uninspired and stuck most of the time, and I hated it. And considering how rough the last month or so has been health wise, 2016 could go either way.

Here we are, the end of a very chaotic year, and I have found something: I want to draw again. And by “I want to draw again” – I mean that I AM drawing again. Instead of just whining that I feel the need to work on some art, I AM. I’m sketching and prepping for some new paintings and practicing to get myself back into the swing of things. And for once, I feel good about it. They’re good drawings, considering how out of practice I am. And people LIKE them. They want the sketches to keep coming. It’s bizarre, to me at least. Mostly, so far, it’s been a lot of character sketches from Star Wars: The Force Awakens.

No: This is NOT my art.

No: This is NOT my art.

So, bring on 2016.

I will write as much as I possibly can.

I will work on my art purely for the happiness it brings to my own heart.

I will work on my collection and appreciate everything I have so far.

I will try to keep this train wreck body from completely derailing.

I will help the world be a better place.

I will not, most of all, let 2016 be the year I am defeated. Not by myself or anyone else. I will keep going. I will gain new ground.

So, let’s do this. Bring on 2016.

~Angel

RAGEAGAINSTDEATH

Typically, I make some sort of Thanksgiving related “Thankful” post. Today, I show how thankful I am for what turned around a very bad weekend.

There is a giant reason that this blog is called “Misadventures of a Misfit” – Frequently, my best laid plans fall apart. Hope for the best, expect the worst, settle for something in between. More often than not lately, these plans are damaged by my wonderful body deciding to do something terrible to me at an extremely inopportune time. I was hoping to come back from Reno with fantastic tales of comic con, and loads of pictures of me super excited and looking like a major dork. But instead I come back still battling my body from what can best be described as the worst flare I’ve had since the initial, horrible flare that put me in Barnes hospital for 3 days and started this autoimmune (mis)adventure.

For a few weeks now, I have been very scared that I’ll have to have a hysterectomy after my procedure. I’ve been very scared to find out I have a cancer I wasn’t bracing for.

This weekend, I was very scared I was going to die.

And as weird as this statement sounds, the weekend was saved by Jay and Silent Bob.

I had just gotten into the con, and my first thing I needed to do was get in line for my picture with Jason Mewes and Kevin Smith. Jason was going to be there for the con itself, but Kevin however was literally there that one day for that one dual photo op with Mewes. I have a lot of admiration for Kevin Smith as a writer and as a creator and person in general and knew this may well be the most I’ll ever get to do in terms of meeting him.

Now, I will say this – I had not felt particularly well this day. But I also hadn’t felt well for a while, hence why I had gone to an ASAP appointment with my surgeon and tests and now the procedure in two weeks. So I wasn’t phased really. It was what it was and had been. I had things to do.

Unfortunately, just before I went up for my photo op, when I had just a few people in line before me, something went wrong in my body. Suddenly I was dizzy, and realized I was going to be ill. Apparently, my blood pressure dropped, my O2 dropped, and ultimately I dropped. To top off this horribleness, I vomited as I went down. Hello, hundreds or so people around me. I am Chronically Ill Girl, and you are not used to my horrible body.

To make this portion of the story as short as possible: I was not well, the Wizard World staff took very good care of me, until the EMT came, checked me out, and had me wheeled away to the first aid station, where I was urged to go to the hospital considering everything going on with my past medical history as well as my current concerns. In reality, I should have agreed for them to call the ambulance. But I was already heartbroken that I’d missed my one shot to see Kevin Smith, and I wasn’t about to miss seeing Adam West and Burt Ward on top of everything else. I got cleaned up and changed and went on with my day.

When I was walking away from my photo op with Adam West and Burt Ward, I was weaving through the booths, and saw that Jason Mewes was at his table doing autographs. I figured I could salvage some of that photo op mishap by at least meeting Mewes. One half was better than not at all, right? And at least I had hopes he didn’t know I was the girl that went down in the line outside.

And he didn’t know… Until my mother told him.

MEWES

So at this point, I’m feeling embarrassed all over again, and I’m ready to shuffle off with my autograph and hide in the corner, especially since I still felt horrible. But that’s when Mewes told me he felt terrible for what happened with me, and that I didn’t get to meet Kevin.

Then he took my number and gave it to his assistant at the table. And told me he’d help me meet Kevin before he left for his flight. Hugs and selfies and many “Thank you”s. I cried when I walked away. I couldn’t believe this was happening to ME.

Now, I’ve been very nervous about actually talking about this, because what was done for me was something I didn’t ask for or expect, and I don’t want someone to ever take advantage of the kindness of others. But still, this kindness meant more to me than I think either of them realized.

So, I went back to my hotel room to shower and rest and in general gear myself up for a few more minutes at con and to prepare myself to somehow meet Kevin Smith.

When 5pm rolled around, my mom and I were waiting in the hotel lobby, as instructed, with promise that Kevin knew I was there waiting for him. I was weak and dizzy and severely anemic, but absolutely determined not to miss this opportunity.

And then I saw him heading my way, iconic jersey and all, and I completely lost focus of how bad I felt as my brain took over.

kevinsmith

I got to meet Kevin Smith. I got to hug him, and take selfies, and he asked how I was feeling. And I GOT TO MEET KEVIN SMITH.

The admiration I have for him already on top of how absolutely freaking AMAZING it was that he and Mewes did this for me made my entire trip. Unfortunately, not long after this, I went downhill again. But for this amount of time, I was on top of the world.

Rage against death by making some art today.

It really sparked a fire in me. I want to create things while I still can. And if ever, for some insane reason, someone looks to me like I do to him, I will do all I can to help make their day too. Someday, even, I’d like to repay Jason and Kevin both. Because something so small and simple to one person, can mean the whole world to another. This was the highlight of my trip, and has turned around the doom and gloom attitude I’ve had toward my health. I can accomplish anything I want, and I don’t have to let anything get in my way. It doesn’t matter if I live ten more years or 60 more.

I will rage against death.

Time to make the best of what time I have. Time to make my mark.

~Angel

Edited to add: Based off of symptoms and blood work, it looks like this was all brought on by a very, very bad disease flare to rival that of the initial one in 2012 that sparked the whole Mysterious Sickness of Doom thing. So I’m still not 100%, but I’m recovering, slowly but surely. Two weeks until my biopsy!

“Working hard is important, but there’s something that matters even more. Believing in yourself. Think of it this way: Every great wizard in history has started out as nothing more than we are now. Students. If they can do it, why not us?” – Harry Potter (Harry Potter and the Order of the Phoenix)

hp

My body doesn’t care about what I want to do, or what I need to do. My body is an angry, vengeful creature staging a violent rebellion against me for everything I do. But I continue regardless, because things must be done, whether my body wants them done.
It makes writing difficult. It makes waking up earlier difficult. It makes focusing on projects and having the energy to complete anything difficult. It makes work difficult. It makes everything difficult. But I cope. I deal. I do my best.

I’ve spent so much time lately beating myself up for the days I can’t do the extra stuff. The days I can’t get out of bed. The days I give more to my day job than I get paid for. But being upset with myself makes matters worse. I need to be my own motivator, and instead I’m dragging myself down.

So, I will write. I will draw. I will post about Batman stuff and nerdy adventures.

Despite being horribly sick all week, I’m continuing on with work and trying desperately to find time to write. I hammered out a quick short story to get myself back into gear. It was sloppy and weird, and hummed with the influence of reintroducing horror back into my life as a regular staple.

But now, I need to get to work on more serious projects. I need to accomplish more.

I can do this. I can push though. I can be everything I want and more.

I just have to believe in myself. Why not me?

~Angel

life

Nothing rains on your unemployment parade quite like your aunt dying the day you’re laid off. While you’re there. Awake. In the room.

Let’s just say that this whole unemployment thing isn’t turning out like it was supposed to. On top of my aunt dying (which was all around a HORRIBLE thing):

– I’ve had a rheumatology appointment that sucked.

– An ENT appointment that sucked WAY WORSE.

– My body hates me a lot more.

– Endless Unemployment related hoops to jump through, including but not limited to job searches, interviews, and trying to remind my brain to file a weekly claim.

– Nieces and cleaning and favors for family and everything that happens when you’re suddenly the one home all the time so everyone assumes they can dump everything on you to do. Which leads to

– No writing, artwork of any real significance, or photo shoots have been done.

I mean, there was that one day I got to go to see Phantom of the Opera at the Fox in St Louis with my best friend. But that’s the highlight of it all. I’ve just been very, very stuck.

So while I would like this to be a check-in telling you all how everything has been marvelous and I’ve been so busy writing and doing amazing shoots and working on incredible artwork – nope. I’ve been rocking sweatpants and cleaning everything and realizing I have no idea how to do anything anymore.

I’ll have a better update soon. But for now, I need to – you guessed it – go clean.

~Angel

I haven’t posted a Soundtrack of a Misfit post in quite a while, but this one needs to be posted. I heard this for the first time in this new year, and immediately it raised my spirits and made me smile. I knew this song was going to be the anthem for 2015, and that of course I needed to share it.

Here’s some lyrics for you:

“I Lived” by OneRepublic

Hope when you take that jump
You don’t fear the fall
Hope when the water rises
You build a wall

Hope when the crowd screams out
They’re screaming your name
Hope if everybody runs
You choose to stay

Hope that you fall in love
And it hurts so bad
The only way you can know
Is give it all you have

And I hope that you don’t suffer
But take the pain
Hope when the moment comes
You’ll say…

[Chorus]
I, I did it all
I, I did it all
I owned every second
That this world could give
I saw so many places
The things that I did
Yeah, with every broken bone
I swear I lived

[Verse 2]
Hope that you spend your days
But they all add up
And when that sun goes down
Hope you raise your cup

I wish that I could witness
All your joy and all your pain
But until my moment comes
I’ll say…

[Chorus]
I, I did it all
I, I did it all
I owned every second
That this world could give
I saw so many places
The things that I did
Yeah, with every broken bone
I swear I lived

From the viewpoint of a chronically ill person, as well as just how I would prefer to live my life, this song is PERFECT. I’d like to believe this is going to be my anthem for 2015, despite all the changes, or maybe even thanks to all the changes. So I guess we’ll see.

~Angel