Posts Tagged ‘fibromyalgia’

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.

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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

So, some of you may already be aware of the fact I had my very first rheumatology appointment on Tuesday. I’ve been so worn out, Ipromise haven’t had the chance to update you. To sum it up fairly simply:

Lots and lots of tests. Twenty tubes of blood drawn. Trying to rule out lots of things: fibromyalgia, Chronic Fatigue, Lupus, horrible “c” word which shall not be named, etc. So far, from the lab work I’ve seen and my regular doctor looked at, I’m coming up positive for some sort of connective tissue disease. But what I’m going to end up with as a diagnoses is really up in the air still. I have a follow-up the 26th to go over my labs and see what the next steps will be, or if she has any answers for me.

And while I’m scared to death it’s going to be something life-altering, no cure, or fatal – I am very relieved about something: I’m not crazy. Well, not about this (ha.)

I have PROOF of something being wrong with these test results. There is something here that shows I’m not lying, and it isn’t all in my head. The Mysterious Sickness of Doom may have a NAME. You have no idea the relief that brings me.

Only now I have to keep from worrying myself to death that it’s something that’ll take me out sooner rather than later.

In other news, I’m slowly but surely getting through the revisions on my WIP. My Beta reader is keeping me motivated by taking on a chapter at a time, and I have to keep up by getting these chapters ready. So far, so good. And really, I’ve been needing this outlet to make me relax with the large amount of stress hitting me in the face. Keep Calm and Write Something. It’s that simple.

Anyway, I’m off. Much to do.

~Angel