Posts Tagged ‘the mysterious sickness of doom’

Another Year: A Short History Of Almost Something

Posted: November 18, 2014 by Angel Young in Life, Travel, Writing
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“I think I’ll wait another year,
It’ll be the best year ever.”

If you haven’t listened to Amanda Palmer’s “Another Year”, go do it immediately. This song is on to Top 5 list of the soundtrack of my life, I swear.

tolive

Now, I have done many, many things in my life. I’ve worked in a haunted house, and a Halloween costume/supply store. I’ve left the country. Twice. Swam with dolphins. Also twice. I attended a writing conference in New York with Best Selling authors and agents and other passionate writer people like myself, and even read part of a manuscript out loud to two agents (both of which were interested in reading more) – before I started my senior year of High School. I’ve been to Orlando four times. I’ve been to Boston and Salem. I’ve been to Chicago, New Orleans, and Nashville for cons. I’ve been to James Marsters birthday party. Sean Patrick Flanery has called my boyfriend and made me blush, and just been an all around awesome dude to me. David Della Rocco kissed my cheek. I’ve met amazing actors, artists, comedians, authors, etc. I’ve met Stan Lee. Multiple times. I met Robert Englund and cried. I’ve been to Batman Live!, Wicked, Phantom of the Opera, and a variety of other plays and shows. I’ve had VIP passes and been allowed into areas others have dreamed of. I’ve shot fashion shows, had photos and articles published, and occasionally feel like maybe I’m going in the right direction.

And so, so much more. So many people and places I can’t even list them all.

But, I somehow still want more. I have worked myself to death to feel like I’m somewhere, or doing something, and not wasting my life behind a desk at a day job.

It feels like I have been stuck in a state of Almost Something. I have almost been published. Almost graduated with my degree as an Art major. Almost stepped up to the next level in photography. Almost almost almost. But I don’t won’t to fall short anymore. I want to move from Almost Something into Definitely Something.

So, next year, I will try to do more. I will try to top everything I’ve already done, just because I have the drive to do it. I don’t want to live an average life. It will drive me insane. I want to feel like I’ve accomplished things and lived a life I was proud of by the time I’m dead.

I’m working on a list right now of things to do in 2015. Because while 2014 had some very good things, it also had some horrible things. And I want more good days than bad. I’ll post a finished list closer to New Years Eve, but there are some points I will definitely touch on:

I will do something writing related, whether it’s a published novel, or another article. Even a baby step forward is better than a stand still.

I will work on my photography more. Because I miss it. Because I need it. I will do shoots and get my work out there.

I will do something more with my art. It’s improving, though not quite where it was art. I would love to start selling prints and pieces to people.

Travel. Experiences. Health.

There is no point in wasting time, when there are adventures out there waiting for me. I just need to seize the chances I’m presented with.

~Angel

Another Diagnosis

Posted: November 17, 2014 by Angel Young in Life With Sjogrens
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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

Change Your Stars

Posted: November 14, 2014 by Angel Young in Life, Life With Sjogrens, Travel, Writing
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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

Good News (For A Change)

Posted: November 4, 2014 by Angel Young in Life
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dancinggroot

The Universe is rewarding me for giving Sunday to myself and my passions, I think. Because since Sunday, good things have been happening:

+ I made a significant improvement health wise from where I was post-procedure.
+ Kicking my NaNoWriMo project in the teeth and getting that sucker DONE.
+ Found a way of making serious headway in my medical bill mess, so I will not longer be The Walking Debt. Well, IF it works out. That’s still up in the air. So cross all things that are capable of safely being crossed.
+ The Jessica Lange cover of “Gods and Monsters” (On American Horror Story: Freak Show) is available on iTunes, and I bought it, and it pleases me greatly. I know that’s a random thing, but hey – gotta appreciate the little stuff.
+ I have a shoot Sunday if all goes as planned.
+ There is a light at the end of the tunnel for something that has been a nightmare for two years now.
+ I feel like I’m making some improvements in my art, and I’m hoping to take some steps forward with that soon.
+ I have adventures to look forward to next year. Plus little get together things with friends the rest of this year.

 

And what may be the best of it all, is that I am learning to redirect negative thoughts as soon as they enter my head. For example: If someone is making my life miserable, and I start to let it get to me, I remind myself that there are billions of other people in this world, and that it is absolutely ridiculous to let one person ruin my day. I take a deep breath and push the thoughts aside, and focus on one of the many good things I have going on. No one is going to take the good going on right now away from me.

~Angel

The Medicine I Need

Posted: November 3, 2014 by Angel Young in Life, Life With Sjogrens, Writing
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“Dreams are renewable. No matter what our age or condition, there are still untapped possibilities within us and new beauty waiting to be born.” ~ Dr. Dale E. Turnerwherewasi1 wherewasi2

 

Those of you that keep up with me in real life, and those that read my health update post, know that I have not been well. After my previous post, I ended up getting even worse, and was out of work most of last week thanks to it. It seems in combination with a rough wisdom teeth extraction, I also developed an infection, which sent my body into a horrible flare mode. Long story short: I was miserable.

I was out of work longer than I had anticipated I would be over this, and most of the time I couldn’t function enough to watch a movie or catch up on my DVR shows. But I started getting frustrated with being sick and useless, so I did what I have done many times before when I’m sick: I started drawing.

At first, I barely managed some terrible little demented sketches. But I kept at it during the periods of time that I felt like I could function, and it distracted me just enough from how terrible I felt. This is how I coped up until Halloween.

Friday, when I woke up, I started crying. Halloween is my favorite holiday, and I’d planned for months to dress up for work, and see my boyfriend that night, and go see Horns in theaters if possible – and if not, they had it available On Demand, so I could watch it that way. But of course, Friday I was still in terrible shape, so: No work, No costume, No going out with the boyfriend. I did watch Horns via On Demand, but that didn’t change how bummed missing my favorite Holiday made me. So, I watched horror movies on the couch all day and rested.

But by Friday night, I was down again. Seeing all my friends posting their Halloween costumes, going out, doing stuff other than being sickly… just made the depression from being sick that much worse. And it’s hard to make your body feel better when the rest of you isn’t up to the task.

Then, I saw someone on my friends list post their costume makeup, and I thought “Hey, I’d like to draw that.” Not just a rough, crappy sketch for practice. I wanted to actually make a piece of art off of what they looked like. So, I grabbed some paper and pencils and set to work. Once I had the basic sketch down, I grabbed my colored pencils and started on the colors. I didn’t finish it that night, because I felt awful, but I was proud of what I had accomplished of it.

Saturday is a blur to me. I know I woke up feeling even worse, and spent a lot of my time trying to rest. I was bummed that my brain fog was at a max level of suck, because it was Day One of NaNoWriMo. So zero words were accomplished.

Now, by Sunday, I was frustrated with myself. I wanted to feel better, not just for NaNoWriMo, but because I was tired of being a slave to my sickness. So I made a plan: I would pace myself, and take the whole day to do it, but I would 1.) work on something photography related, even if I just edited one of the many photos I’m behind on, 2.) work on the piece I started on Halloween, and 3.) I would start on my NaNoWriMo project, even if I only typed 50 words. Getting 50 words into the project was a hell of a lot better than having nothing.

There were naps involved, and I really did only edit one of the photos I’m behind on. But I managed to get quite a bit of progress made on my art, as well as nearly 3,000 words into my NaNoWriMo project. And the best part of it? I was proud of myself at the end of the day. Despite the horrible way I felt, I accomplished something I set out to, even though it took all day.

But it didn’t stop there: Today, I feel SO MUCH better than I have. I’m still not functioning at 100%, and I don’t feel well at all. But compared to how I have felt for nearly two weeks now? Major improvement.

Was it the boost in my spirit? Or just the illness calming down from running it’s course with this flare up? Who knows, for sure. But I would like to credit it to doing the things  I love most.

Here’s to what I hope is a very successful November!

~Angel

A Bit of Health Catch-Up

Posted: October 28, 2014 by Angel Young in Life, Life With Sjogrens
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Well, 2014 has apparently been the year of random health stuff happening. I’m not even sure where to start…

zim
Let’s just begin with the time before I went to Orlando, in a brief summary:

+ Rheumatologist was freaking out about my kidneys, and said I needed to see a nephrologist ASAP. And considering 1.) My father and his twin both died with kidney problems and 2.) even if I didn’t have a family history, my disease can damage my organs, including my kidneys. So this has been a giant scary red flag of dread.

+ My liver is also not behaving as it should be.

+ My thyroid and lymph nodes are also not my friends right now. So, more tests there.

+ Basically my body hates me.

Since I’ve gotten back:

+ I’m set up for a pre-surgery consult for my ovarian mass on November 10th. Finally getting rid of that sucker.

+ Thursday was a bunch of dental procedure stuff. And since I have an autoimmune disorder that likes to focus on my mouth, and the work needed to be done to not let that get worse, but the procedure itself causes problems… Let’s just say I’m not having the best recovery ever.

+ The specialist for my kidneys was not a fun day. Blood work and tests and just bad news. My kidney function seems to be fine, but there is still damage being done. A considerable amount considering my family and personal history. I follow up with that doctor November 6th. And he’s already told me he wants a kidney biopsy done, which will not be a fun time I’m sure.

I’m sure there are 8 billion other things that I can’t think of right now, because the brain fog is so intense right now, I feel like I’m never going to crawl out of it. But I figure everyone deserves an update on how my health misadventures are going.

Hopefully I can get my head clear in time to start NaNoWriMo this weekend, and make an attempt to enjoy my favorite holiday – Halloween.

 

~Angel

What Gets Me Through Pain

Posted: September 19, 2014 by Angel Young in Life, Life With Sjogrens, Travel, Writing
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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

The Adventures of Chronically Ill Girl

Posted: August 22, 2014 by Angel Young in Life, Life With Sjogrens
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Onedoesnotsimply

I know I haven’t update properly on my health in a while, so I figured I would take this opportunity to do so.

I just want to throw it out there, in case I haven’t done this enough already — I hate hate hate HATE going to the doctor. Because usually, there’s more going on than I’m ready to deal with, or I’m blown off for things I know are wrong. As you can assume, I didn’t really have the very best series of appointments. Who can blame me? Take late April into the beginning of May, for example. Within three days, I saw an ENT Oncologist, a gynecologist for the ovarian mass, and then a gynecologist surgeon specialist about the mass. Not to mention tests and stress and bleh bleh. I still don’t even know what all there is to cover, but it was a lot. And as much as I love my ENT Oncologist, I do not love hearing I have a 1 in 5 chance of getting lymphoma now, instead of the 1 in 8 chance I had before.

But I digress.

I’ve felt really awful lately, and I’m starting to worry. So we have a bunch of blood work ordered, and imaging tests, and all that fun junk to see why my body is misbehaving. Not to mention, I have FIVE appointments the  beginning of September. I literally have appointments September 8th, 9th, 10th, and 11th, then have an appointment 9/17 as well.

It’s looking like September will be hectic, especially with me leaving for Orlando at the end of September.

I’ll have a proper update with how these all go after they’re all said and done.

~Angel

The Walking Debt

Posted: April 25, 2014 by Angel Young in Life
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Fun fact: I just realized Wednesday night I have A LOT more medical debt than I actually was aware of. So just as I figured out a game plan to get my life all situated and ready for progress, I’m hit with the cold truth I have three times as much four-digit debt than I assumed.

And you know what?

mattsmith4

That being said….

I’m still working on getting it all paid down or off, so that I can move forward. I would love to have my own home in the next year or two, but financial circumstances keep getting me into weird messes. And even though I have no plans to quit my job right now, things are getting pretty rough here, and I can’t even promise they’ll keep me if push comes to shove.

So, what will I do about all this mess?

The answer: The very best I can.

I will continue to live and travel and plan and make myself happy now. Because you know what? I need to be happy NOW. I can’t be guaranteed that there will be a tomorrow if I don’t take care of myself today. My body freaks out under stress now, something I used to handle A LOT better pre-Sjogren’s flare-of-doom in 2012. But now I am constantly reminded: Cut back on some stress, or it will only continue to get worse. My body has made this point to me, too.

KIDNEYS

Yet, stress keeps building: bad news, big news, dread, debt, work, health, everything.

Last night and today have been particularly rough, and I want nothing more than to go curl up in bed. But duty calls, and I must do that which must be done before I can focus on my body.

And while I do have some good news to share, that will come with the next post.

~Angel

Health Update

Posted: March 6, 2014 by Angel Young in Uncategorized
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My health has been a bit… questionable the past several months, with 2014 deciding to be especially brutal for me. I haven’t been too well to post much, especially about what all was going on, until just the last little bit. So here I sit, ready to spill my guts about all the health type things. Bad before the good, right?

Well, I was sick for a bit in early January with some sort of upper respiratory infection that left me miserable and hardly functioning for a week. That was bad enough. But not long after that, I believe January 18th,  I woke up with some unpleasant lower back pain. It wasn’t comfortable, but I dealt with it all day. The next morning I felt fine for a while, but by that night, I was screaming in my mom’s bathroom floor, convinced I was dying. I am not one to go to the ER for just anything – I literally have to be convinced I’m going to die. The only other time I had been, I was still refusing to go. But this instant? I was begging for my mom to take me. I couldn’t find a comfortable position, and was vomiting. I was sure that my organs were shutting down and I wouldn’t even live long enough to make it to the hospital.

The nurses in the ER hooked me up to an IV and started some fluids, anti-nausea medication, and a pain killer. They took a urine specimen, blood, and sent me for a CT. To my surprise, the doctor said I had a HowIRolltiny kidney stone that would pass on it’s own. I felt ridiculous, but also relieved. The nurse, however, when getting ready to discharge me, mentioned something else  –  a left ovarian mass. The doctor had forgotten that part. He prescribed me an antibiotic and Tylenol and sent me on my way.

A day or two later, a nurse from the ER called me. She insisted I see a Urologist about my kidney stone and follow up with my doctor about my ovarian mass so I could get an MRI. This phone call really bothered me, so we had them send my CT report to work. Sure enough, there was a big ol’ spot on my left ovary. And something that bothered me just as much – especially since I was still having pain where my stone was… Not only was my kidney stone bigger than the ER doctor said,

It was stuck.

The technical way we could phrase that is an obstructing kidney stone that caused a small rupture. Yup. It said rupture. In other words, I had some leaking fluid coming out because my kidney is a spoiled brat.

Later that week, we did get the MRI done for the sake of my ovary, which showed it was slightly larger even and appeared cystic. Then we did an ultrasound to check on my kidney stone – my kidney was still swollen, which meant I likely still had it stuck. The next week, I went to see a Urologist.

I was hoping for some magical pill or treatment procedure that did not involve scaring me senseless. Unfortunately for me, the doctor said I needed to have a procedure done the following week. The whole shebang – putting me to sleep, going in and using a laser to remove the stone, then putting a stent in for a week. Since I’ve never had a procedure in which I needed to be admitted and have something put into my body while I’m unconscious, I was pretty nervous.

And I can assure you, the stent was NOT MY FRIEND.

I spent a week and two days with pain and constant discomfort before we could remove it, which meant I had to undergo the same admission process and go back to sleep, the whole nine yards, just to take it out. But I was completely ready and willing to have that thing removed. Ick.

Anyway, I have a Urology follow up Monday and meet my new Rheumatologist Wednesday, so expect another health related post in the near future.

makenicethings

~Angel

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