Updates + Short hiatus
A lot has happened in the last year or so!
HEALTH
There is good news. I officially might not have Amyloidosis. One doctor said I did and one said I didn't based on the same tissue slide. The one who said I probably didn’t suggested things like sarcoids instead.
The bad news is that, whatever this disease is, amyloids, sarcoids, whatever, it’s an autoimmune disease that’s reacting to something and causing thickening of the tissue. This autoimmune disorder is also causing my guts to be messed up and my skin to break out in hives whenever I'm touched, because my body thinks that everything is some kind of attack needing an immune system response. The treatment in any case is to prevent whatever is causing the reaction, right? Except we still don’t know for sure what that is.
The most progress we've made is determining that, of all things, severe acid reflux is most likely what's irritated my throat and keeps it swollen. And great FUCK it is severe. My GP is a "meds first, ask questions later" sort of guy and I have exhausted nearly every drug he can give me with no reasonable improvement AT ALL. At one point I was on horse pills that my Grandma takes (1000 mg sucralfate! one thousand milligrams!!!) and they were doing nothing. I'm finally getting sent to a gastroenterologist several months later--which was what I had requested at the beginning, but whatever.
I have not had my throat looked at since early this year, so...god only knows what it looks like now. Honestly, it still feels the same (like something is stuck in there) and it’s still 50/50 if I can use my voice on any given day.
Getting told I was probably dying also didn't help my anxiety, so I started getting severe daily panic attacks. Like, thinking that a pain in my leg was a DVT or thinking my chest pains were heart attacks or my stomach pain was a hernia. Every day. After something seemingly benign and simple became such a huge mess, I couldn't stop myself from thinking "What if this is really serious and I don't get it checked out?" and would sit and shake violently for 15 minutes every day and night. SO I went back on antidepressants/anxiety meds. I still assume I'm going to die every time I get a pain, but the emotional response is not there anymore so I can go about my daily business and go to bed at night like normal. 
Other than that, I found out in the last month or so that I’ve never had depth perception because my pupils are two different sizes and my eyes aren’t aligned correctly, and these things caused me to develop alternating extreme exotropia and hypertropia! In high school I thought I was just getting dumber and dumber because I stopped being able to read for extended periods and couldn’t retain material worth a shit compared to when I was a kid, but as it turns out I just couldn’t see! Wow! Tomorrow I’m going to find out if I need to start vision therapy!
LIFE
Some months ago I finally got out of the airport and into a job that is much closer to my house. It's a retail job and I don't plan to stay very long after the holidays, but it doesn’t make me want to kill myself like the airport did!!
A lot of people have asked me why I didn't/haven't stopped working despite being sick. At first my dad offered to support me so I wouldn't have to work, and even despite that, I could have probably applied for some kind of assistance. But I know there are people who have it worse than me who still work, and I already felt like a huge burden my whole life, so I try to avoid doing anything that could make me feel worse in that way.
Around the time I last updated, my computer was on its deathbed. Soon after, the cheap hinge screws broke and started pulling my laptop's screen apart whenever you tried to open it. My laptop screen was stuck at a 45 degree angle for a few months and I couldn't even use it without a screen tablet (my bf got me an XP pen display 12). Anyone who watched my streams during that time knows it was getting to be a pain in the ass for me to draw on the thing let alone stream during.
Finally my laptop totally died and my bf sent me his nearly 10 year old laptop as a temporary replacement. Except it's so old there is no windows 10 driver support and the screen resolution didn't match my tablet's. On top of that it can't handle streaming software and can barely handle my art software, and even using it is hard because the screen brightness is stuck on 100% and I already explained how bad my eyes are earlier in this post. So this is the main reason I'm still working--to save for a new computer. Unfortunately I don't think I will be able to get one until next year. Reason for that being, the money I’ve saved NOW is going towards a short vacation in November, when my boyfriend is coming over (which we’ve been planning for over a year, before the computer trouble and before my job change), and after that, it’s holiday season which means getting stuff for everyone lol.
This leads into my final topic,
ART
My last update on WOL was several months ago, and bitch I’m shook. It’s because my computer situation is shit but AAAAAAAAAAAAAAAAAAAAAA!!!!!
To try and remain SANE I work on World of Light in some capacity every day. Revising and refining scripts, thumbnailing pages, sketching specific moments, developing color keys, and discussing things with my editor are some of the ways I try to stay on top of things, now more than ever since actually making pages is basically impossible with my current tech. I have not (and will never) give up on this comic until it is completed. That said, the time between updates is getting ridiculous, especially since the computer troubles started. Just so you know, I die a little inside every day I can’t work on a page. I’m so tired of not being able to. I just want to stream and make pages (sometimes 2 or 3 a week like before!!) and interact with everyone again. But the reality is that updates can’t happen if I don’t have the tools to produce them at the quality I want and expect from myself. So again, I will not be able to update until I get another computer, which will probably not be until early next year.
I had an idea for something original that I thought I was going to drop, too, but I feel like it is healthier not to humor the “Hey you could die anytime from anything so don’t bother” line of thinking that I’m sort of accustomed to.
So, while working on WOL I’ve been trying to develop something.
Before all this health shit started, I actually tried to pitch a show to adult swim. But I was really not prepared and I didn’t have a single clue what I was doing compared to now (and I’m still not even completely done with pre-development). Obviously I got rejected, mainly because my project looked “too young” i.e. something one would see on Cartoon Network instead. But they also told me to work on it because they “recognized my art” and didn’t outright reject me for that, which counts for something I guess? LOL
ANYWAY, I don’t think I’m interested in making it a show anymore, but whatever it ends up becoming, it’s not ready yet. WoL went through many years of development and already had the benefit of being about established characters that I’d grown up trying to capture the essence of, so this is on a whole other level of “needs work”. But, by the time I’ve finished World of Light, if I’m still around, hopefully I’ll be ready to start producing it. The working title is Sins of the Father, and you can meet the familiar-faced characters here.
If you would like to talk to me or follow what I do, tumblr is probably the best place, with discord a close second. I know that a lot of people will leave Deviantart because of Eclipse, even though the site update is primarily to fix the god awful security holes in the current site's backend. I will obviously stay after the permanent switch, and there are plenty of other places I post to if you are leaving Deviantart but still wish to follow World of Light when it resumes soon.
Thank you for reading, for caring, and for being you.
Half update and discord
The good news:
They said that Amyloidosis in the larynx typically looks slightly different from what I have. It tends to be uneven. I got to see in my throat for the first time, and compared to a normal throat, mine is like the fucking Michelin Man! Everything is ballooned up, but they said my vocal cords and the stuff below them look fine. So the reason my voice is shit lately is not because of my vocal cords, it's the fact that I can't get enough air down there to make normal sounds most of the time. Who knew?
However, they said if all my blood tests came back negative, then I might have to be referred to the amyloid center.
I had about 12 blood tests, and they all seemed to come back relatively normal, but this is what the doctor said when I messaged her about them:
The only result that was significantly elevated was high-sensitivity CRP. Although this tells us that you have an abnormally high amount of inflammation in your body, it does not give us any specific information about the exact process that is causing the inflammation. We are still awaiting your pathology results and slides to review here at Vanderbilt. We will let you know when these are received and what next steps should be taken. In the meantime, if you experience any significant difficulty breathing, please proceed to the emergency room."Pathology results and slides" refers to the sample and the report from the surgery I had before Thanksgiving. This message was sent exactly one month ago on 12/19, and I haven't received any further correspondence.
The bad news:
It could still be amyloidosis, something better, or something worse. They think it is a reaction to something else that's going on with me...but if they don't know what that is, there's nothing I can do to prevent it from getting any worse.
This all started because one morning I woke up and thought I swallowed something in my sleep. Overnight my throat swelled up to over 150% of its normal size and just never recovered.
I cannot allow it to happen again, but until I know what caused it, I'm always worried about not being able to prevent it. Right now I feel worse than I did when I went, but I guess not bad enough to go to the ER.
Also if anyone knows any jobs that don't require constant talking hmu.
TRYING NOT TO THINK ABOUT IT TOO MUCH
I did offer my discord to those who asked for it, but I remembered that I never posted about my server. If you want to come hang out, get notifications when I'm streaming, see stuff I don't post here, chat and share shitty memes, I would love to have you! discord.gg/eQ9cQtP Obviously I don't join voice chat a lot lately but some days are better than others. If I can talk at all I will probably turn the mic on.
Hi everyone!
UPDATE TWO (MOST CURRENT):
Updates + Short hiatusA lot has happened in the last year or so!
HEALTH
There is good news. I officially might not have Amyloidosis. One doctor said I did and one said I didn't based on the same tissue slide. The one who said I probably didn’t suggested things like sarcoids instead.
The bad news is that, whatever this disease is, amyloids, sarcoids, whatever, it’s an autoimmune disease that’s reacting to something and causing thickening of the tissue. This autoimmune disorder is also causing my guts to be messed up and my skin to break out in hives whenever I'm touched, because my body thinks that everything is some kind of attack needing an immune system response. The treatment in any case is to prevent whatever is causing the reaction, right? Except we still don’t know for sure what that is.
The most progress we've made is determining that, of all things, severe acid reflux is most likely what's irritated my throat and keeps it swollen. And great FUCK it is s
UPDATE ONE:
Half update and discordI was referred to Vanderbilt so I could see a national expert in otolaryngology and... there's good news and bad news!
The good news:
They said that Amyloidosis in the larynx typically looks slightly different from what I have. It tends to be uneven. I got to see in my throat for the first time, and compared to a normal throat, mine is like the fucking Michelin Man! Everything is ballooned up, but they said my vocal cords and the stuff below them look fine. So the reason my voice is shit lately is not because of my vocal cords, it's the fact that I can't get enough air down there to make normal sounds most of the time. Who knew?
However, they said if all my blood tests came back negative, then I might have to be referred to the amyloid center.
I had about 12 blood tests, and they all seemed to come back relatively normal, but this is what the doctor said when I messaged her about them:
The only result that was significantly elevated was high-sensitivity CRP. Although this tells us
I usually hate seeing journals like this, but given that I’ve spent 13 years on this site and met thousands of people, knowing there are at least a few of you who would probably want to hear if something was going on, I figure this is the only way to tell you.
For the past several years I’ve been dealing with health issues that I originally attributed to being overweight and/or having a sedentary lifestyle.
A few months ago, I was dealing with a chronic sinus infection and drainage from hell. To offset my symptoms and maybe get some sleep for once, I went to bed with a breathe-right strip on my nose. I woke up with no nose strip to be found and a weird feeling in my throat, like something was there. I went to the emergency room assuming I had swallowed the strip; they looked in my throat and said they didn’t see any plastic strip, but they did see that my throat (epiglottis, vocal cords etc) was terribly swollen, and because I work at an airport, tuberculosis had to be ruled out before I could leave. They kept me in the hospital overnight to test me and watch the swelling. Obviously I didn’t have tb as I had been vaccinated years before, so they let me go and had me follow up with an ear/nose/throat doctor.
They had me take an allergy test, which came back negative. Not allergic to anything.
Then they suggested a biopsy, to see if they could figure out what was causing the swelling, as it hadn’t improved since I’d been in the hospital 2-3 months back. They would also give me a steroid shot inside my throat to see if that would help.
The surgery went okay I guess. Two of my IVs infiltrated which hurt like a mf, I still have a huge bruise a week and a half later, and they said the piece of my throat they cut out was yellow instead of pink--obviously not good.
The steroid shot did nothing. I got the results on Monday, and as it turns out, I have a rare condition called Amyloidosis. Basically, in reaction to a chronic infection, my body’s antibodies become proteins and build up in my tissues and organs. That's what's causing my throat to be twice the size it should be.
There are a few different types of amyloidosis based on which organ is most affected, and treatment varies. However, there is no cure, I will never breathe normally again, and the maximum life expectancy is maybe 10 years with the best form of the disease and early diagnosis and treatment.
I’ve been having symptoms since high school, so we can go ahead and knock at least five years off of that. Also, I don’t know what type I have, and I’m supposed to see a doctor at Vanderbilt to get their opinion and see if they can recommend a treatment. They haven’t called with an appointment time yet but I’m sure it’ll be months before I can go. I might not have that long.
Bros, I’ll be honest for a second. I never expected to live to 30, really I never expected to live long after Jack ended because that shit was keeping me going for so long. But knowing that I might not make it to 25, that I might not make it to tomorrow, is something I didn’t expect. I know I shouldn’t jump to conclusions, but if I’m unfortunate enough to have developed this disease, I’m probably unfortunate enough for it to be too late already.
I don’t want to give up yet. I still want to finish World of Light, just to finish something for once in my life, and leave something for this world that proved I was here that can bring other people joy the way these characters have brought me joy. I had other things I wanted to do, fan content and original ideas, but I realize and accept that I probably won’t be able to do them. I had two jobs, just quit one. I’m going to dedicate all my free time to finishing my story. In the event that I do end up dying before I’m finished, someone I trust will release all the material I have and the ending.
This also means that I will no longer be finishing commissions. I’m deeply sorry that I have basically strung some of you along for almost two years, and I’ll send what I have to you. If you’d like a refund, please send me a note with your up to date paypal and that’s what the rest of my money will go to. Again, I’m sorry for all the trouble I’ve caused you.
If you ever wanted to ask me anything, tell me anything, get to know me, or whatever, now is the time to do it. Leave a comment or send me a message and I’ll do my best to respond to you.
I’ll keep you all updated here in this journal.
Thank you all for everything: For your support, your kind words, your encouragement, your gifts, and your own contributions to the world that have made me so happy over the years and kept me going.
Always remember:
There are shy people like me who might not tell you how much they appreciate or adore your work, but live to see you post something new.
No matter how unloved you feel, there is always someone out there who would be destroyed if you died.
Life is short, maybe shorter than you think, so spend it doing something you love...even if that something is drawing weird crack fan art.
add me on shit if you want
POKEMON GO
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