Tag: General

But What Does it Mean?

When I was first diagnosed with Lupus, my husband didn’t want me to tell anyone.

I asked him– Why?

Because they will think you are a leper. 

Wait. What?

You know leprosy. Because of the skin lesions. 

Silence. *Looks at self for skin lesions dismisses eczema*

When you mention lupus, the first thing people think of is people’s faces being disfigured by skin lesions. 

Apparently, some people think when you mention Lupus it means you have a form of Leprosy.

So I started thinking about what he said. I hope people don’t think we are a bunch of lepers. He is clearly uneducated and speculating. I’d rather find out it’s the real association behind the name than being called a leper.

This led me to research what Lupus erythematosus really means.

Lupus has Latin roots and means “wolf.” Rogerius, a 13th-century physician, used it to describe facial lesions comparable to a wolf’s bite. Erythematosus has Greek roots and means red for the color of the lesions.

One theory is he thought the distinctive butterfly rash looked bad enough to call a wolf’s bite. The other theory says the markings are similar to those of a wolf’s face. Since the disease has the power to eat and tear up your immune system, I would say Lupus acts like a Wolf.  I can’t say I like any of these theories.

After finding out what Lupus means, I believe it does make it sound like you are marked by the disease.

I don’t worry about what others think when they hear I have Lupus. If I didn’t have it, I wouldn’t know what it was, so the issue is maybe they need to educate. If you don’t like me because of it that is fine. I’m cool. Because it’s cool to be kind.

 

 

 

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Ragged Patchwork Doll.

Ragged Patchwork Doll.

© 2020 LC

She is a ragged, patchwork doll,
Stitched together with good intentions.
Incapable of pain, she has no feelings at all.
Look at her there, she is so small.
Resistant to all interventions.
She is a ragged, patchwork doll.
Once she was able to stand tall,
Now she does not recognize her reflection.
Incapable of pain, she has no feelings at all.
Her mind devoid of recall,
A victim of her own obsessions.
She is a ragged, patchwork doll.
Unfortunate life threw a curve-ball,
So much for perfection.
Incapable of pain, she has no feelings at all.
Look at her struggle. Rise and Fall.
Left alone to her own demise.
She is a ragged, patchwork doll.

Incapable of pain, she has no feelings at all.

I wrote this some time ago when I was in great pain. Have you ever felt this way? Let me know in the comments.

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Welcome Readers!

Hello There! I’m new around here, and this is my newly-shined and polished blog. I hope to write here a lot. Not just about health-related issues, but about anything and everything. I’ll try to keep it entertaining, and if you think it needs something- you tell me what that something is, and I’ll listen!

I made this blog because I like writing and I like people. I like putting those two things together. I love having a good conversation!

About a month ago, I was diagnosed with Lupus, and while finding I had Lupus wasn’t life-changing for me (as my Sjogren’s diagnosis), it still has changed my life to some degree because I’m now left dealing with it. But I never said I’d let it beat me, I try not to let life get me down.

What I’d like to do is try to raise some awareness of this Autoimmune disease stuff, and let people know that even though we have a disease– you aren’t going to catch it. It’s invisible, something you cannot see, but inside–  the people dealing with these diseases are people just like you. We are pretty normal and when we can’t for whatever reason (be normal) since our health issues won’t let us– we are trying to be. Personally, I think being normal is overrated.

I feel like there is so much stigma surrounding autoimmune diseases/chronic pain disorders because it’s something not everyone understands or talks about, and I’d like to try to help with that.

So about me, I love baking, writing. And singing though I wouldn’t say I’m good at it. My kids would say yes, but they lie. Bless their hearts. Love em! I have two dogs. The oldest one is lazy and set in his ways. The youngest one is the most loving, cuddly puppy I’ve ever had, and the most comical. He is a good therapy dog, but he is not trained to go anywhere. Probably best. He is mischevious.

I love poetry, coffee, and music. I have not met a kind of music I don’t like except for country. If you like country, I hope I didn’t offend you. I love to watch movies. I love playing games with my kids. I love the Tutor Era/Midevil Times/Middle Ages.  I love History.

When I’m not flaring, I like to exercise and get outside and do things. There is so much beauty to be found around us in nature! My favorite pastime is bugging my husband to do things outside/inside and knowing he’s not because he is always working on cars/playing video games.

Until next time! Hope to see you again soon.

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