Archive for the ‘Life With Sjogrens’ Category

“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

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

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!

TylerKnottGregson

I had hoped I could take on 2015 better than I had 2014. But my final two days of 2014 were awful, and carried their awful into 2015. Bad work stuff, my aunt having poor health and being admitted to the hospital, and then my own health plummeting on New Years Eve and ruining my writing date (more on that in a moment), all contributed to one of the worst transitions into the New Year.

New Years Eve health junk was particularly bad. I went from a general not feeling so great, to shaking because I was so cold, to vomiting in the bathroom at work, and then delirious the rest of the night, with my mom and brother trying desperately to either get my fever down or to get me to agree to go to the hospital. Neither worked out, really, since I refused to do anything but burrow beneath a billion blankets and pass out randomly. They finally got me to drink and hold down fluids around midnight (Happy New Year! Drink your Sprite.) I refused to eat for well over 24 hours, and even then I barely ate anything. All I’ve had today is a piece of toast, and I wasn’t too excited about that.

I still feel pretty awful, and everyone is pretty well in agreement that I should see an oncologist (*gulp*), especially with my lymph nodes being crazy, and my liver being gigantic. I don’t drink or anything, so I know that alcohol has nothing to do with my liver. I guess we’ll see what fun health misadventures await me this year.

My sad, ruined New Years writing date with Taylor obviously was shot, as I mentioned, by my sickly meltdown. ‘But what is this writing date?’, you may be wondering. Well, Taylor and I have come up with a story idea. Something I’d like to see turned into a novel. He has a brilliant mind and should honestly write books, be a professor, make movies, and a million other things because he is, in fact, that amazing. But anyway, we had planned to have dinner, watch movies, and rough out some plot and a game plan for this book. I’m hoping I feel well enough to reschedule for this weekend.

Besides, it looks like 2015 is going to be a bumpy road. Maybe all the sudden bad at the end of 2014 was the Universe, yet again, screaming at me to refocus my priorities. I’d like to think that. I can imagine the Universe having a tantrum, yelling: “Alright, I’ve had enough of your shit! You have more important things to be thinking of. More important work to be done. NOW GET TO IT.”

The Universe has given me my ultimatum: Get your shit together, write, and take care of yourself, or die miserable and ignore your purpose. But how this ultimatum was presented is still scary to me. I can’t go into much detail at the moment, but let’s just say it’s 95% likely I will have A LOT of writing time on my hands in the coming months.

Anyway, that’s it for now. I’ll have more things next week I’m sure.

Until then,

Angel

 

somethingeveryday

With the new year fast approaching, I have some goals in mind to make my life a little better in 2015. Some are simple and seem silly to others, while some seem like I’m aiming for too much in one year. But hey, can’t hurt to try, right? Aim for the moon, land among the stars.

So here are some goals or things I want to work on in the next year:

+ Write more, and accomplish something with said writing. Whether it’s an article, or a novel, I need to move forward.

+ Focus on my health. On improving it, and coping with it.

+ Give more time to my creative outlets, like photography and art. Because those things make me happy, and are good for my soul.

+ Fatten up my savings account. It’s time to move forward, in more ways than one.

+ Read more. Reading makes me happy. It’s a cheap escape from the every day world. And I’m a writer, dammit. Reading is important.

 Of course things like travel are also included in next year, but not so much as goals to accomplish, because I will go somewhere regardless.

So, there you have it, my goals for 2015. While this year started off pretty rough, I won’t let the same happen to 2015. I will conquer. I will seize control of my life. I will take steps in the right direction again.

See you next year!

~Angel

makenicethingsI could easily admit Sjogren’s Syndrome when I was diagnosed. I was scared, but I could easily say that yes, I have it. And Fibromyalgia didn’t scare or surprise me, mainly just irritates me.
The new specialist I’ve been seeing about my ovaries diagnosed me with Polycystic Ovarian Syndrome. It’s not something I scream from the rooftop, but I can still admit it.
But I can’t deny the one disease, of all diseases, I have dreaded being told I have. Because Thursday, it snuck up on me, in blood work I never imagined it appearing on. Diabetes.
Mind you, I have not been a diabetic. I have my blood drawn and checked a bizarre amount. I just had it checked right before my dental stuff. But there it was, plain as day, looking back at me. And when the nephrologist that had drawn the labs called me, I hoped he would say it was a fluke. But nope. It’s all mine. A new diagnosis.
And I don’t like it.
I literally fought the diagnosis, denying that it could honestly be happening. But today, I can’t deny it anymore. I started to feel horrible at work, and sure enough, when we checked my blood sugar, it was elevated. Very elevated.
The best guess anyone has as to why I have had normal blood sugars, and now not normal blood sugars, is a combination of horrible genes and my last steroid treatment being such a high dose so many times a day, that it pretty much caused a steroid induced diabetes.
Basically: The medicine to help the rest of me not be sick, woke up another sickness. (Which, I must say, is bullshit. Stupid body.)

But, why am I throwing all this out there? Because I am ashamed. And I shouldn’t be. I don’t want to be. I’m posting this because I need love and support to get me through it, and I won’t have any of that if I pretend I don’t have it.

Diabetes is a disease that, in both Type 1 and Type 2, is frequently misconstrued by the media and society in general as something to be embarrassed of. People suddenly think it gives them a license to be an asshole to you, because you obviously “did it to yourself.”

Diabetes is an autoimmune disease. So, why don’t I want to treat it like Sjogren’s, where I can just as easily say that I have Diabetes as I do with Sjogrens?

I don’t want to perpetuate this idea that I need to be ashamed.

And I am going to fight like hell to turn this mess around, not so people don’t judge me: but so that I can live this fabulous, adventurous life I have dreamed of.

 

~Angel

I was overjoyed most of this week because of good news. It was finally looking like things could actually be okay, and I could move forward with my life and get out of the rut I’ve been in. Until yesterday.
Yesterday was a bad day. Today hasn’t been too swell, either. A lot of it has to do with health reasons. Bad tests. Bad news. News I don’t need.
The worst part of it all is that I felt like I was finally getting somewhere, I finally had a direction to go. And then I hit a wall just as I started. And I’m staring at it, unsure of what to do. Unsure of what I can do. It terrifies me.
Last night it left me so lost and scared, I didn’t know if I could function.
Today, I didn’t want to get out of bed. I was done. Done with everything. Because I took one step forward, and it launched me three steps back. Suddenly, the things I wanted to do, the things I had set my heart on, seemed like they weren’t worth it. And yet, they seemed to also be the most important things in the world.

I considered buying a one-way ticket anywhere but here.

I considered things much, much more permanent. Because I am scared, and I am human, and I am overwhelmed.

But instead of giving up, instead of running, I’ve decided I just need to work harder, and save up faster, and just use this all as fuel to get me somewhere I need to be. Whether my health gets better or worse, I need to continue forward.

It is time to change my stars.

Motivation-Picture-Quote-Later-Never

I’ve decided:

+ I’m paying off my medical debt ASAP when my check comes in.

+ I’m going to save up for a new car, if I can’t fix mine.

+ I’m saving up for England, and going in the next few years, even if I have to go alone.

+ I’m quitting NaNoWriMo to focus on the project I had been working on, because I want it ready to go by February to agents.

+ I’m going to begin selling my artwork, and taking it more seriously.

+ I’m going to take my health back. My life back.

+ I’m going to break away from all the negatives in my life, and start fresh. New home. New work. New life. No more toxic people slowly killing me.

 

So I will work harder to earn more. I will write, make artwork, sell Scentsy, do photo shoots, sell my own stuff, save birthday/Christmas/bonus money.

I will not be dust. I will burn up in a brilliant blaze and be ashes.

I am not done yet. There is so much more I have to offer the world, and myself.

 

~Angel