Posts Tagged ‘adventures of chronically ill girl’

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!

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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

alice

“My life’s all I got, and Heaven is all in my brain.
And when I feel I’m in Hell, my ideas are what get me through pain.”

¬†It’s been a crappy health related week or so. Not too horrible. But there are some scary things happening and some procedures and ASAP referrals to new specialists for test concerns. I broke down crying yesterday, having a childish “why me/not fair” fit. Honestly, you deserve those sometimes when health stuff gets stressful, but not all the time. I can’t be broken all the time. Too much to get done.

But with the 5 billion things going on, I didn’t finish up my chapters for Brittaney (slipped my mind, can’t imagine why) and so now I feel like an extra super failure for not writing like I was supposed to. And with me being gone for two weeks, I’ll be even more behind on my writing, unless I take a laptop or notebook and some printed stuff with me to work on while I’m gone. But then I have to do a lot of hoping that I don’t end up too exhausted to write.

And I honestly am so freaking ready to just pack up and leave for Orlando. So ready. But I have a little over a week until I actually leave, so there is still waiting to be done. Luckily, not much. But the stress relief will do wonders for my health, I’m sure. If not physically, then at least mentally. I need my happy place.

¬†Despite the bad stuff, I am sketching more, and obviously the desire to write is there.¬†Even with¬†the chaos of the week, I did some writing. I just¬†didn’t make it¬†to my goal. I even worked on some outline stuff for NaNoWriMo to prepare for November.

 My creativity is willing to jump in and distract me from the pain and stress and everything else until I can escape for a while to refresh my mind, body, and soul.

Hopefully soon I can start sharing some art with you guys regularly, and possibly even have some to sell. But for now, I just sketch and practice and work away at being better.

Until next time,

~Angel