This is me keeping personal records of all the physical and emotional symptoms of my illness. This is something I need because I usually forget these things by the time I go to see my doctor. Also I would like a place to talk about things related to this while keeping it separate from my main blog.


Text

Apr 16, 2013
@ 1:06 am
Permalink

I’m going backwards

I thought I was doing so well, too. 

My pinky’s swollen again. It hasn’t been swollen in six years, since right after I was diagnosed. This means that my lymph nodes are starting to swell up again. Who knows where else it’s happening that I haven’t noticed. 

To be honest, it’s my fault. I haven’t taken my prednisone in at least 5 days. But it’s never gotten this bad this fast. I’ve been off my medicine for weeks without symptoms like this. My skin is starting to peel on my face, too. and I I can’t it hasn’t been constantly embarrassing. 

It’s making me more scared by the day. What if it gets to point where all my medicine can’t fight this off anymore? 

Well, actually, I don’t need to ask that question. I already know the answer to that. 


Text

Apr 16, 2013
@ 12:56 am
Permalink

WHHHHHYYYYYYY did I caffeinate myself at 12:30 at night? 

Read More


Text

Apr 14, 2013
@ 3:04 am
Permalink

Funeral for Memories

It really sucks when something happens to you that rips out all those insecurities you’ve gotten so good at burying and throws them in your face.

It had taken years to get me back to this point and I’m still not where I used to be. It will definitely take me more years to get back there. It sucks like HELL. Because even though I’ve thought up counterpoints to everything that I am insecure about, it doesn’t change the fact that my past experiences proved each of those insecurities true.

I often wonder what I would be like if I’d never experienced any if that at all. It’s all really shitty because I can’t honestly say that I’m better off. It all did nothing for me besides give me a bunch a bad memories. And I can’t talk about it because I promised a long time ago that it’d all be buried and it wouldn’t be brought up again.

So all I can do is keep shoveling dirt on it. I await the day where my insecurities will stay dead.

It’ll never happen.


Text

Jan 27, 2013
@ 3:20 am
Permalink

Wow, do I really have only two pages of posts on this blog?

I should complain more to take up space. Where do I start?

  • KNEES HURT
  • HANDS HURT
  • TOO DAMN COLD OUTSIDE
  • UNREASONABLY AFRAID I’M GOING TO JUST DROP DEAD BECAUSE I’M OFF MY MEDICATION WITHOUT BEING WEENED OFF. 
  • TOO CLOUDY TOO OFTEN. IT MAKES ME KINDA SAD.
  • WHERE IS THE GODDAMN SUN? 
  • IF YOU CAN’T BRING ME SUN AT LEAST BRING ME SNOW. 
  • EVERYTHING ABOUT THE FUTURE SEEMS MISERABLE.
  • WORLD’S GONNA END AND I’M GONNA HAVE TO BE HERE TO WITNESS THAT SHIT.
  • MAYBE I SHOULD JUST DROP DEAD TO AVOID THAT.
  • I’M NOT SUICIDAL DON’T SEND ME ANY MESSAGES ABOUT IT.
  • POTATO POTATO POTATO THERE IS NO POINT BEHIND THIS BULLET POINT
  • HEY DID YOU KNOW I’VE WRITTEN PORN BEFORE? 
  • JILL-DECOY ASSOCIATION IS A GREAT BAND.
  • THESE AREN’T EVEN COMPLAINTS ANYMORE.
  • I’M JUST TAKING UP SPAAAAAAAAAAAAAAAAAAAAAAAAACE.

Text

Jan 27, 2013
@ 2:50 am
Permalink

If I didn’t update this before: 

Generics are STILL going to cost over $100. 

I’m going to call mom tomorrow. 

I have no idea what to do or how I’m going to survive this semester if I keep chucking away money like this. But I may not have a choice.


Text

Jan 26, 2013
@ 12:45 pm
Permalink

Too expensive. Even the generics are too expensive, over $100.

I’m almost completely out of medicine. I have no idea what to do. If I get sick again and I have no meds to counter it…


Text

Jan 26, 2013
@ 12:13 am
Permalink

Got sick again last night, but didn’t have to go to the emergency room. I still have the prescription from November. 

Glad I didn’t go…

My insurance is currently expired. I didn’t know this until today. So, I wouldn’t have been covered for the costs of the visit if I had gone. And now I can’t pick up my medication refills either until I see what the cost is for generics.

Every time I get on a streak of good things happening, something goes wrong. 

Not even just a little wrong. 

It’s always something that just completely, totally, screws me over. 


Chat

Oct 25, 2012
@ 3:33 am
Permalink

Frank: hey baby, if you made a contract with qb, what would your wish be?

Me: to be a normal healthy girl again

Frank: fuck

i wish i could just glomp you right now.

...i kinda lost my shit just now.

>.>

Me: how come?

Frank: ...you're

...

i love you

i don't know how to put this

but you kinda struck an emotional chord with me just now

and i'm kinda crying ^_^;

Me: *huggles* there's no need for that.

Frank: *cuddles* but you work so fucking hard. you don't deserve that awful disease!

you didn't do anything!

you did nothing wrong!

why do you have to suffer like this!?

i don't understand it

i don't get it.

i know you don't either

but i don't know how to help you

i want to help make you smile


Text

Oct 25, 2012
@ 3:27 am
Permalink

I once anonymously posted a secret online where I stated that I felt I was dying a little bit faster than everyone else.

Someone made the point of saying that “I could get hit by a bus tomorrow”.

Chances of getting hit by a bus: about 1 in 13 million.

Chances that I could die in the next 20 years: Depending on the study, it’s between 1 in 10  and 1 and 5. 

I can assure you, you don’t have the weight of possibly being hit by a bus constantly on your mind. I hate to sound so full of rage (and let’s face it, I’m good at it), but it’s not the same. It’s just not. And I get the sentiment you’re trying to project to me, but…

It’s just not the same. Thank you. But it’s not the same. 


Text

Oct 24, 2012
@ 12:21 am
Permalink

I wouldn’t wish Chronic Fatigue on my worst enemy, quite honestly.

Lazy. I’ve been called that my whole life for various reasons. Cause I was an awful procrastinator, or I wouldn’t clean my room, or I just straight up never did my homework. Sure. I’m lazy. I’ve been lazy before. I won’t deny that. 

But the me that I am now…This goes beyond that.

And I feel not a soul understands. 

I believe that I mentioned on my personal blog that I was diagnosed with lupus when I was 16. Before then, I could go to school on three hours of sleep with no problem. I wouldn’t even need a nap later, and I could do it all again the next day, again without issue. But now I feel like I need sleep all the time. No matter how much sleep I get at night, no matter how much I nap during the day, I always. Need. More. Sleep. 

Do you have any idea how frustrating this is now that I’m in college? Knowing that if I was still my 15 year old self, I could be doing a lot better with time management because I wouldn’t need to sleep so much? Knowing that I get tired every few hours no matter how much caffeine I drink? Knowing too much stress on any one joint can cause my arthritis to flare? 

I’ve turned into this poor delicate thing and I HATE IT. 

The last person who could somewhat relate to my health problems (because she had it way worse than me) died 3 years ago. Since then, I’ve had no one that truly understood what it was like to be and feel sick all the time. Every single day you wake up. 

Did I mention my 21 page children’s book got move UP to November 8th? I have ONE page painted. ONE. 

I nearly had a breakdown about it all today. 10 minutes before my night class. I almost starting bawling in my bedroom. I haven’t cried about anything in 6 months, and I’m too proud to lose that streak. So I wiped my nose, sucked it up and arrived to my comic book class 10 minutes late.

I may not even graduate in May if this keeps up. It’s been suggested to me that I drop a class this semester and next semester and take them at Midlands Tech over the summer. But I’m so tired of school that I. Don’t. Waaaant. To. *whiiiiiiiiiiiiine*

Even right now. At this moment, I’m tired. I feel exhausted. And I’m mentally tired because I’m always physically exhausted. I feel trapped. I can barely do anything. 

I come to college, I finally figure out what I want to be, and…I may not be able to do it. I’m finally doing something where I can show my characters to the public and…I’m constantly afraid I won’t finish it in time. I can finally be the storyteller I feel like I was meant to be and…I’m too exhausted. I can’t help but wonder why I’m still here. What’s the point if I can’t do what I came here for? 

And what do I do with my life if I can’t do this?