Posts Tagged ‘autoimmune diseases’

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

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aconstantbattleThere is nothing we can do to stop the progression. We can only monitor the progress and manage the symptoms as best we can to make you comfortable.

I’ve known this. I thought I even came to accept this. But at the follow up, I came to realize my reporting of everything going on became almost a plea with the rheumatologist to just fix it and make it ok, because I don’t want to deal with this every day for the rest of my life.

Yet, she gave me that sad look of “I’m sorry, I can’t help you.” And I know this. I understand this.

I know. I knew it then. I’ve known it for a while.

But for some reason, I left feeling so brokenhearted, so lost. Getting my blood work back Wednesday didn’t help how I felt about it all, either.

There are many, many worse things that I could be going through. I don’t doubt many people are tired of me and everything going on health wise. But you don’t really understand until you’re the one sitting there while a stranger is telling you that you are going to be battling the rest of your life with your own body, and it’s going to dramatically change your life. It’s scary. It’s unreal. It’s certainly a hard concept to take it. You can’t just take some medicines or have a surgery or anything and make it fade into a distant memory. It’s here for the long haul.

People forget too easily that we are all mortal, we all have weaknesses, and we all get scared sometimes. We will all die someday.

And here I sit, an ache still eating through my chest, because I still don’t understand how to cope yet, even though I pretend I do.

There’s hope that with a little less stress on me when my 90 days at work are up, I can give my body a chance to strengthen some, and maybe slow the progression naturally.

not just survive Because I am exhausted all the time. And sore. And miserable. My eyes burn and I feel like I haven’t tasted water in a century, even if I’ve just downed two bottles of water. I’m in this terrifying fog that I get lost in, and I’m scared I’ll forget how to get back out of it. I want my energy back. I don’t want to worry about my organs. I don’t want liver damage when I’ve purposely avoiding drinking alcohol. It isn’t fair. (Yes, I’ve fallen back into the ‘Why me?!’ crap, I’ll be over it soon.)

Truth be told, I want my life back. I want me back. And I’m working at it, I’m getting scraps of myself back. Sometimes it’s vague or fades quickly, but sometimes I get chunks that last longer. Like, I think my writer-ly brain is starting to wake up again. It’s about damn time.

Speaking of – you remember the craft analysis that I was worried about? For my Creative Nonfiction class? Totally got a perfect score on it – 100/100 points. She even wants me to email it to her as a reference for future classes as an example. 😀 But back to the point…

Basically, this is going to be a constant battle, one that I won’t always be willing to fight. I have to, however. Partially because I’m stubborn. Mostly because of the people that need me. So it’s time that I write like a good little writer and try to make something of myself. At least then I’ll feel like I’m worth something again.

Until next time, when we will have a much lighter subject matter-

~Angel

Each way I turn, I know I’ll always try
To break this circle that’s been placed around me
From time to time, I find I’ve lost some need
That was urgent to myself, I do believe

Life is weird. I say this a lot, actually. Sometimes because my life is being weird, sometimes because the whole world is going insane around me, and sometimes as just a gentle fact. But here it is, staring me dead in the eye, being all weird and whatnot, saying “Behold my grand symphony of destruction and creation.” I’m just supposed to sit back and survive the ride, but I’d like to actually enjoy said ride. Even if it’s crazy. Even if I think I might die with every twist and turn. I need to grit my teeth and hold on and try to enjoy it.

Tonight I think I’ll walk alone
I’ll find my soul as I go home

So, one of my very best friends – Skylar – is about to leave for the army, and it’s eating me up inside. I know she’ll be back. I know it’s for the best, and I’m so proud of her for being so brave and jumping out there int0 this great wide world. But it doesn’t change the ache in my chest, and it certainly doesn’t change how much I’m going to miss her. She leaves the day before Brittaney and I head to Orlando. Then, while we are in Orlando, the anniversary of Eric’s death will roll around. It’s going to be the first time I haven’t spent the 23rd of June at the cemetery, and I’m somewhat terrified. I guess a part of me is worried he’ll be let down. I know I’m worried about how I will handle it when the day actually comes. But I know that if I stayed here, dealing with Skylar leaving, Eric’s anniversary, and the approach of Whitney’s birthday… I couldn’t handle it. Not this year. Not right now. So I need to be away. Fate gave me an opportunity and I took it. Even though there is peace when I’m alone at the graveyard with him, I know that someday I will have to leave the land of the dead and learn to hold myself up as one of the living.

Something that helps me rejoin the land of the living: Going to the zoo with my maniac friends. Hell, adventures with them in general is just.. Yeah ❤

ZOONINJASCREEPSHOW

I failed miserably at finishing my manuscript in time for my self set deadline (well, I wasn’t off by too much until work got in the way), which is why I haven’t posted really for some time. I was trying my hardest to make sure I accomplished that. But, things happen. I’ll get it done. But first, I need to finish my photo shoots with Little Red – aka Skylar – before she leaves.

Plus, I’m learning to deal with the Mysterious Sickness of Doom — erm, my bad — Sjogren’s. But explaining that is a post all it’s own.

“Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure – these things just fall away in the face of death, leaving only what is truly important.” — Steve Jobs

Anyway, that’s all for tonight. I shall post more hopefully this week.

~Angel

We’ve been playing a game of “What the hell is wrong with me?” for about a year and a half. And now, we finally have some names to throw out there:ImagineSjogrens

Last appointment, I was diagnosed with fibromyalgia. We discussed the possibility that Lupus is developing. Today I was diagnosed with early stage Sjogren’s.

This is a disease that usually hits menopause age women and older, though it can hit someone my age. It’s just pretty rare. So, if and when I ever have children, I’ll need a high risk OB.

There are ways of managing Sjogren’s to make it more comfortable, but there are no medications specifically for it and no cure. I’m also at risk of serious complications, the big one being Lymphoma. So I have to be on high alert for those symptoms. And Sjogren’s can play brother and sister with Lupus, so we’re predicting that is in the process of possibly developing as well.

Mostly, I’m just dumbfounded that there’s not just ONE name for what’s wrong with me. There’s a few. The biggest relief is that I’m NOT CRAZY. I have proof of something being wrong with me. Something that can be explained.

Now, to just plan how to make these life alterations so I can cope a bit better.

More later,

Angel.

So, the last I left off with you guys, I had just gone to an awesome Con and met some amaaaaazing people. I had an appointment coming up for the Mysterious Sickness of Doom and was stressing myself into madness. Well, obviously, that time has come and gone. To be honest, I started to write several posts, but I kept stopping myself for whatever reason. So here I sit, debating. Should I write? What should I post? What is too much or too dull or.. I honestly don’t know.

I’ve been sort of lost lately. Stress is eating away at me, corroding what remains of the walls I’ve built around myself. To give you a glimpse of how my brain works:

I keep trying to fill in the voids. Patch the cracks before I split open. That sorta feeling. I gave myself something to work toward, to look forward to (I’ll get to that later), but still.. Still I sit there, eyes tightly shut, losing my marbles over and over. I start to lose track of what’s real and what isn’t. Did they really say that? Did he really do that? Is this happening?

So, I want to write things. I want to draw things. I want to take pictures. I want to get this OUT OF ME before it tears me apart.

But I lose faith in my writing.

I make up excuses to avoid my artwork.

Do shoots I’m paid to do, find myself hating my work even if I like it, then feeling discouraged all over again.

Then I look around my room. Look at these things that make up some part of me. Look at my Batman collection. Admire it. Hate myself for it. I’m stupid for having it. People hate me for it.

People hate me for everything in here. Everything about me. People hate me. My friends hate me. I hate me.

I go back to sitting there, a pen in my hand, a blank page to confess whatever I need to release. And I can’t. I’m scared.

Get online. Obviously every damn post is about me. Obviously, that random girl is talking about my boyfriend, because she would make him happier than I make him. So then I’m thinking about myself. What’s wrong with me? I’m fat. And ugly. And just.. just not right. I’m not right. I shouldn’t eat, because I don’t deserve it.

I don’t deserve anything. Any of it. I don’t deserve life. I’m a terrible daughter. Terrible sister. Terrible friend. Person. Everything. Don’t deserve this breath, don’t deserve the next one.

Here we are again. Blank screen. Need to post. Doctor’s appointment. Need to update. Fibromyalgia, Lupus, more blood work. Phone call. More abnormal tests. Sjogren’s. Ultrasound. Biopsy. I feel sick. What did she say? Feel like I’m dying. Why won’t she just say it – you’re dying. Because I feel like it. Everyone thinks I’m crazy. I shouldn’t whine. I could be worse. I just want to cancel my appointments. I’ll just cancel them all and stay home. No. No, can’t type that. Not tonight.

Delete. Blank screen.

What am I thankful for? Little things. Work on Little Things.

Thankful for my friends. But they hate me. Thankful for my upcoming trip. Best friend doesn’t care doesn’t want to go hates me. Causing problems with everyone. Everyone is going away. Everyone is leaving or dying. Should I be leaving or dying too? Everyone goes away in the end.  I need to keep them safe. Don’t do drugs don’t smoke don’t drink don’t get hurt. But I’m wrong, because I’m always wrong, and because I make a better Villain than Hero. So I piss everyone off because I love them. I’m a terrible friend. That’s why they all go away. I wish I could just go away. How dare they tell me to take care of myself, when they’re trying to hurt themselves? Oh but I’m wrong, you see. Because they NEED that. I’m stupid. I’m so damn stupid.

I can’t do anything right. Why do I even bother?..

 

That is the best description I can give of my thought process lately. I seem to go through this every single day, over and over and over. I get a little crazy. Sometimes, it becomes more than thoughts – sometimes I start going off on people for things they haven’t done.

But I have to keep some very important things in mind: I can do ANYTHING I set my mind to. I am LOVED. I have a bright FUTURE, no matter the past. And I have lost too many loved ones to live anything but the best life possible, in honor of all of them.

Which is what I plan on doing: Living. Time to snap myself out of this rut. I mean SHIT man. I met STAN LEE. Honestly. I do cool stuff on a regular basis 😉

NOW, on to other matters:

I surprised my best friend, Brittaney, with a trip to Orlando this June – gonna hit up Disney and Universal, stay in the ultra fancy Yacht Club at Disney, and just chill and be happy youngsters. The last time I went, I wished Britt was by my side the whole time. So, I had to pull of some amazingness to make it work, but she is definitely going with me. 🙂 I’m counting down the days. Literally. There’s an app for that.

I’ve also been forcing myself to write and draw and take pictures again. For me. To get whatever it is out that I must get out. Because I’m a weirdo, and that’s what we do. Blessed are the weird.

I’m also going to make some SERIOUS changes soon. I don’t wanna give away what exactly, but I will soon enough.

Anyway, that’s enough from me for tonight.

 

~Angel