I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels
Showing posts with label rare disease. Show all posts
Showing posts with label rare disease. Show all posts

Tuesday, February 28, 2023

I have rare disease, and I’m not sorry.

It’s rare disease day. I’ve talked about it for years, and while I believe I have taught some people a few things, I don’t see any evidence that it matters so I'd rather be shot than go though another rare disease day.

People lack self-awareness and empathy. All my life, they have acted like the struggle of chronic patients is a personal attack on them and their idealism. It’s prejudice, nothing more, nothing better. They’re just plain prejudiced against the sick and poor, and are ashamed they are forced to encounter someone they can’t fix or control. I don’t care how the hell they were raised or trained; it’s a moral failure that I will never accept or respect.

Pain outweighs everything else in my existence. When it finally ends and I am permanently at rest, I will be better off. I don’t care how stupid that sounds.

I don’t care. My new year resolution is to stop caring so much. If you are embarrassed that I learned how to publicly advocate for myself to stay alive, tough luck. If you think I’m “negative” for battling serious illnesses and talking about it, leave and never come back. If you’re a user or abuser who is part of the problem, die.

I have rare disease. My life is ruined by it. I’m angry about that and at all of the people who failed me. I have every right to be, and I’m not sorry.

Sunday, February 28, 2021

Rare Disease Day 2021

 


I started a thread on Facebook, which can be found here. I suspect I won't see a lot of interaction on it due to this being a Sunday, and a lot of my friends aren't on the book of face on weekends. That's fine. I am easily overwhelmed these days, and my head is constantly swimming in fog.

I'm disappointed that I haven't blogged much this month. I do still have a couple of things to catch up on, and I will. For now, I'm better off lying low. You know where to find me if you want to talk.

In conclusion, I'm still here. I'm glad you are, too.


Saturday, February 29, 2020

2020 Rare Disease Day

This year’s advocacy and Q&As can be found on Facebook and Ask. Mostly Facebook.

Facebook thread:
https://m.facebook.com/story.php?story_fbid=10156748847975740&id=543800739

Ask is a pain to dig through, but here it is if you want to go there:
https://ask.fm/ugottafriend

If you have questions, and the above places are not ideal, you may email me at ugottafriend4life@gmail.com.

Thanks for your interest,
Kelli

Wednesday, February 28, 2018

Rare Disease Day '18

I have systemic disease: conditions that affect multiple systems of the body.
I'm going to make this easy on myself and share links from Wikipedia.
The references are valid, so don't worry too much about misinformation.




I may have forgotten some things, but I tried to share as much as I could.
I'll reboot the medical blog soon. I get tired of talking about it sometimes.

At any rate, if you have questions or concerns, you may email me.
I won't promise a quick reply, but I'll eventually read and address it.

I've learned you never know what someone is really going through.
We only see the surface most of the time, so it's best not to be judgmental.
Thanks to those who bring awareness, and to those who stand by us through it all.