An Open Letter of a Lupus Warrior: Navigating Through the Dark Days

Konnichiwa to you all! It's your ridgette again, and I just want to ask you all first: are you alright? Was your day fine? Today, I'm going to share my pre-commemoration blog for my lupus journey. It's been almost a year since I was diagnosed with this disease, and up until now, I'm still at my acceptance stage.

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During the first months after I was diagnosed with lupus, I wrote these letters to lessen my emotional and mental burden. These letters helped me let out the feelings that I couldn't share with my family. Writing these letters somehow helped me get through the emotional turmoil that I had experienced during my first months of recuperating, so please bear with my writing skills because what I've written were the words that immediately came to mind at that time. I was driven by emotion and not the passion to write aesthetic pieces, so if you think it's kind of messy and you can't handle reading it, it's fine; you can leave it right there, but if you're interested, I'll gladly join you as I reminisce about the darkest days of my journey as a lupus warrior.


The Screams of the Silent Soul

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She
She screams in silence
A sullen riot penetrating through her mind
–She, Green Day

February 2023

Looking way past the days this month, I had a lot of things to look forward, and naturally those are the happy moments. But later it was shaded with foreboding uncertainty, and uncertainty that quickly turned into reality. I was grateful that I was able that I was able to spend time with my friends, for me that was one of the happy things that I've done, and I'm grateful to have that opportunity!
Almost half of my experience, or majority perhaps were challenging. I was slapped quite hard that I didn't met the 'given' deadline of my 'dream' college school that I've been looking forward since gradeschool. I wasn't admitted there because of the unavailability of my grades. To be honest, I was sad, wait–that's an understatement, I was quite grief-stricken. It somehow triggered something, and that something turns out to be somewhat life-changing. I have a lot of decisions that I regretted that I never considered to take, but perhaps now it won't change anything. Everything happens for a reason, and I hope it will lead me to happiness someday.
To sum things up, this month taught me a lot about acceptance, though I'm not sure if I fully grasped it. It will take time to accept those consequences, but I know God has, somehow, hopefully, have plans for me.

-gette


Tears of the Lost One

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Is your heart singing out of tune
Are your eyes just singing the blues
–Amy, Green Day

July 12, 2023

To the girl who lost,

The humiliation you've experienced,
didn't hurt you like the usual
it didn't even hurt your ego
or feel like the first time
losing in contest
sobbing all night
crying like some scared child
but it's enough to tip men's pride
yet you prevailed
but now's different
it wasn't the loss, it's the humiliation
it's like your pride being dented
not like but it is
just a little dent that hurts like hell
imprinted like a scar
a big wound but actually a
scratch
just a tiny scratch...

Setting it free,
the lost girl


Down to the Murky Road

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Little girl, little girl
Why are you crying?
Inside your restless soul
Your heart is dying
–¿Viva la Gloria? (Little Girl), Green Day

July 29, 2023

An eavesdropped confession:

She felt guilty and ashamed for she know that lately she became a burden to all of them. They wouldn't want to upset her, but she could see it that they were silently suffering. Their eyes spoke for their lamentations, and she was ashamed that there's none that she could do to ease their suffering. Not wanting to waste the effort they have done to ease her illness, she tried to change, but her attitude silently creep back and peel the awful mask that she keeps on wearing. Slowly fading into the abyss of despair, she could no longer contain the misery that she had felt. The loneliness, the hopelessness, the despair, and the punishment that she think she deserved. She wanted to feel it alone, and to suffer alone, but fate seems to hate her. It shared the misery to the people around her, slowly tainting the shreds of every single hope that they have, poisoning the happiness that they have, and that crumbling hope, no one knows if they are still with it. She wanted to take all their misery; God knows she wanted to take it all, but she was left puzzled as to what would He planned for her. She was slowly losing that faith that once bloomed in her hopeful heart, her happiness that creep in her soul was slowly fading... fading to eternity.

To the one who dreamed,
gette


Accepting the fact that I will not be the same as I was before was really tough. I'm still seeking reasons why God gave me this ordeal. Honestly, I really don't mind if he punishes me through this disease, but what I mind is that I became a burden to my family. I'm used to being independent and dependable, and I did everything to make them proud and not be a burden to my family, but everything changed when this disease came.

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I became a burden, and I knew we suffered not just financially but also emotionally and mentally. I knew that during that time they gave up a lot of things just for me to survive, and I knew I would never ever repay those things. I'm not talking about money or material things, for those things were far more important than money and material things. I'm still wondering why this happened to me and why things turned out this way. I know that He certainly has reasons, and as I move forward towards my journey as a lupus warrior, I'm hoping that I'll discover those reasons along the way.

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Hi Ridge. Reading you was certainly emotional. I have never had to fight Lupus so I can't say I can imagine. No I can't. I won't devalue your strength that way. What we may have in common is acceptance. May not be in the same context but I understand how tough it is to come to a junction where you just "live" with it. You bear it with so many other questions ringing at the back of your mind and then like a soldier, you move forward - it is definitely not easy.

I don't know why these things happen either. But they just do. One reason I give myself is, "God let it come my way because He knows I am strong enough for it and if I am not, I trust Him to carry me."

I take solace in the joy that He trusts me with fighting my way through. And I don't think God is punishing you for anything. The world is just unfair. I really hope and pray you emerge the true fighter you are - brave with scars, kind at heart and full of soul.

Best wishes
Deraa.

Thank you so much @deraaa, I was really moved by your words...reading this makes me wanna cry (⁠。⁠ŏ⁠﹏⁠ŏ⁠). I'm really hoping that He will help me get through this...

These were like little hugs to my soul. For some reason I am inspired to keep on fighting something I’m dealing with
I don’t know and can’t imagine what you’re going through but one thing I know is you’re not burden to your family
Trust me when I say this. I understand that you are used to being independent but no you’re definitely not a liability and I know your loved ones are happy to stand with you in these times.
I’m also glad you know He has reasons for everything He does and I’m hoping that you get your wish of knowing these reasons.

Thank you @abenad, your words are surely reassuring ⁠♡. I hope I'll find those reasons someday ಡ⁠ ͜⁠ ⁠ʖ⁠ ⁠ಡ...

I know you will

I could feel your pain as if I owned them as I read. The despair, the need to bear it all alone, the crushing weight it brings, and the endless hiccups.

Surely, one will be shaken, the presence of hope and faith almost lost. You feel heavy with unshed tears with questions, guilt, and then acceptance.

For one, I am glad you have sweet people around you to let you know you are not alone because you aren't. God will never give us a test without a way to sort it out. And, I am glad you've found ways to pour out your words, and I hope more will come to you ways will come to you.

I know what it feels like. Being terribly sick/diagnosed with something. I still carry my cross with what I have. I accepted it as it is. It is not easy, but it isn't impossible to get back on your feet and face the world with a sweet, deep smile.

You can listen to some music to help.

Songs like Who You Say I Am, The Blessing, Lord I Need You, and some others are my daily sweetness to continue living life.

Hello dearest fashionable dreemer. Happy Tuesday! It is tunes day, sweetie. I hope you are ready to feel our minds with those killer tunes of yours. Enjoy the rest of your day, and never forget how beautiful/handsome you are. I waltzed in from #dreemport, for I am an amazing #dreemer. An awesomely made #dreemerforlife.

God will never give us a test without a way to sort it out.

Thank you @balikis95...indeed, He certainly will never give us challenges we can't handle
(⁠ ⁠ꈍ⁠ᴗ⁠ꈍ⁠)...

That's right. Thanks for staying strong

I pray that you and your family will find happiness soon. And yes, all things will be fine, but we have to walk through the fire to become stronger....

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Thank you @wrestlingdesires (⁠ ⁠╹⁠▽⁠╹⁠ ⁠). It's certainly necessary to walk through those hardships first, for me to emerge stronger...

I have faith that you will like who your experience lets you become :) It doesn't only add strength. Our trials also make us wiser, and improve our empathy with the suffering.

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tus letras me llegaron profundamente. Deseo que esto te sirva para trascender en tu vida y creo que vas a darle vuelta a la rosca a tu favor. Te mando un abrazo fuerte y una sonrisa enorme!

Thank you very much @alfty, I'm grateful that you're touched with my words. I'll definitely strive to upcome the future challenges that may come to me.

Hello dear @ridgette 🤗

We are very sorry to hear about this diagnosis. Acceptance is a key stage in this process. It is good that you take your time and also writing helps a lot.🌷

Remember to put somewhere in your post the source of your images. I'm sure the pictures to the letters are yours, but we are not sure if the pictures to the books, to the dictionary are.😊

We hope you continue to find the strength to go on.🌟

Thanks for the words of affirmation @hive-102879 , by the way, all of the pictures are mine, I have collection of books and dictionaries here, so I just take a picture and just put a camera filter on it. The first picture was from our old dictionary, the second book is from my personal bible, while the last pic was from my personal diy project for wall deco. I kind of avoided using pictures that's not mine because I find it hard and quite a drag to put sources (⁠+⁠_⁠+⁠)...

Everything happens for a reason @ridgette, always remember that. I will pray for your healing😇🤗

Thank you @digdeeper2 , I know that my journey towards healing wouldn't be a smooth one, and your prayer will certainly help ⁠╹⁠▽⁠╹⁠ ...

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@wrestlingdesires(4/15) tipped @ridgette