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Julia

@arwe_nessa

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🛹 Skater soul | Goth glow
📷 Mirror truths + Dead poet lines
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And to all the caretakers out there…

I see you.

People talk about what chronic illness takes from the person who is sick, but sometimes they forget what it takes from the people who love them.

It isn't easy watching someone you love fade.

It isn't easy watching their dreams become impossible, their world become smaller, their independence disappear.

It isn't easy hearing someone you love say they don't want to dream anymore… or that they don't even want to exist.

We grieve too.

We grieve the life we imagined together.
We grieve the things we can no longer do.
We grieve the person we remember while desperately loving the person who is still here.

And sometimes we are exhausted. Angry. Heartbroken. Scared.

But we keep going.

We learn how to care for them.
We learn how to protect them.
We learn how to carry what they can no longer carry.

Not because it is easy.

Because we love them.

To every caretaker quietly holding someone else's world together while their own heart is breaking:

You matter too.
Your grief is real.
Your exhaustion is real.
And you are not alone.

Keep loving them.

But please remember to be gentle with yourself, too. ❤️

#mecfs #chronicillnessawareness #caretaker #caregiver #mecfsawareness by @arwe_nessa

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2 months ago

Radiating resilience—because giving up was never an option. ✨

#punk #emo #grunge #resilience #happy #90s #skatergirl #altgirl by @arwe_nessa

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a year ago

probably thinking about snacks 🍕💭

#alt #emo #skater #grunge #blondevibes #altgirls #tonyhawksproskater by @arwe_nessa

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a year ago

HAVE WE ALREADY FORGOTTEN THE VICTIMS OF THE EPSTEIN FILES?!

Seriously… how is it possible that we barely talk about this anymore?

Sports, politics, celebrity drama, endless scandals, and so much other BS dominate our conversations and our news feeds. But what about the children? What about the victims? What about the people whose lives were destroyed?

Where is the outrage? Where is the public pressure? Where is the demand for JUSTICE?

These were real human beings. Children. Vulnerable people who deserved protection, but instead suffered horrific abuse and exploitation.

And we cannot let the seriousness of these crimes disappear just because the headlines have moved on.

The Epstein case raises deeply disturbing questions about power, influence, accountability, and whether everyone is truly held to the same standards. Survivors deserve to be heard. Evidence deserves to be investigated. Anyone who committed crimes must be held accountable, regardless of wealth, fame, or political connections.

How can we keep talking about sports, political drama, and meaningless celebrity gossip while victims are still waiting for answers and justice?

Have we become so desensitized that even something this horrific can disappear from public attention?

These victims are NOT just headlines. They are NOT something we should forget when the next big story comes along.

THEY DESERVE JUSTICE. THEY DESERVE THE TRUTH. THEY DESERVE TO BE REMEMBERED.

So I'm asking you:

Have we already forgotten them? And if not, WHY AREN'T WE TALKING ABOUT THIS MORE?!

Never let the world move on so easily that the victims are left behind. 💔

#epsteinfiles #justiceforvictims #protectourchildren #exposethetruth #neverforgetthevictims by @arwe_nessa

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4 days ago

There is a kind of grief that comes with being alive while watching pieces of yourself disappear.

I grieve the person who could think clearly, feel deeply, laugh without effort, make plans, be spontaneous, and simply exist without fighting through every moment. I miss being fully present with the people I love. I miss recognizing myself.

So if illness continues to change me, remember me for all of me, not only the version you saw struggling.

Remember the husband. The father. The son. The friend. The man who loved fiercely, dreamed enormously, laughed, explored, fought like hell, and kept searching for the light even when he could barely see it.

Remember me as I lived, not as illness left me.

Here are a few photos from some of my favorite memories, the moments that remind me of who I am beyond this illness, and of the life and people I love so deeply.

Don’t mourn for me. I lived. I loved. I fought.

#lettinggo #surrender #mecfs #autoimmune #goodbyefornow by @arwe_nessa

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20 days ago

Most days, I’m confined to my bed. Being present with my family often means simply lying beside them, unable to participate in conversations, process my surroundings, or experience the emotions that once made life beautiful.
It isn’t glorious. It isn’t pretty. And there is nothing romantic about fighting to survive inside a mind and body that no longer cooperate.
I’m now undergoing aggressive, highly experimental treatments that most patients never have the opportunity to access. Even with these options, my future remains uncertain. There is still a chance I could regain meaningful function, but there are no guarantees. I’ve recovered before, and I desperately hope I can again.
I just wanted to share my reality and bring awareness to the millions of people living with these devastating illnesses, many of whom have far fewer treatment options than I do.
Some days, fighting simply means enduring another day when you have almost nothing left to give.
I’m exhausted. I’m terrified. But I’m still here. And despite everything this disease has taken from me, I’m not ready to give up on the possibility of getting my life back.
To everyone who has carried me when I couldn’t carry myself, thank you. ❤ especially you @arwe_nessa
#mecfs #autoimmunedisease #encephalitis #spoonie #millionsmissing by @arwe_nessa

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21 days ago

My love, I want you to know how incredibly proud I am of you. ❤️

Proud of you for fighting. Proud of you for getting up every day and continuing, even on the days when everything feels impossibly hard. I see how much you’re going through, and I see how hard you’re trying. I wish you could see yourself through my eyes, because to me, you are so incredibly strong.

But more than anything, I’m proud of the man you are.

You are such an amazing father to Thoren. The love you have for him, the way you care for him, and the moments you share with him mean more than I could ever put into words. He is so lucky to have you as his dad. ❤️

And you are the husband I could have only dreamed of. You are my person, my home, and the love of my life. Through everything we have faced, I am still so grateful that I get to walk through this life beside you.

I know this fight has taken so much from you. I know there are days when you are tired beyond words. But please never forget that you are loved beyond words, too.

Thoren and I are so incredibly proud of you. We love you more than anything in this world.

Keep fighting, my love. One day at a time. One moment at a time. ❤️

#warrior #autoimmuneencephalitis #proudwife #mylove #chronicillness by @arwe_nessa

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25 days ago

For Austin, with all my love. ❤️

I see your pain. I see you fighting every day. And even when you can’t see a way forward, I will keep believing in one for you.

Just hold on. One moment at a time. You are not alone. 🖤

#love #illness #autoimmuneencephalitis #ʏᴏᴜᴀɴᴅᴍᴇ #always by @arwe_nessa

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a month ago

🛡️💔

I had to use AI to write as I can’t handle more than 30 mins awake. by @arwe_nessa

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a month ago

Hope is lost but I can’t let go 💔

#millionsmissing #encephalitis #autoimmunediseases #depression by @arwe_nessa

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a month ago

After three better weeks, weeks where Austin was able to spend a few quiet minutes in the garden, look at my plants, breathe in some fresh air, and enjoy precious quality time with his family, especially his son, we’re facing another really difficult relapse.

He’s struggling badly again. Sensory overload, overwhelming fatigue, fear and paranoia, an extreme sensitivity to sounds and light, and days where even the simplest things feel almost impossible. Seeing him go from those little moments of freedom back to barely being able to function on his own is heartbreaking.

I do everything I can to help him, to make things quieter, safer, and easier for him, and to be there through the worst moments. But there is only so much I can do. I can’t take this from him, no matter how desperately I wish I could.

So right now, we’re taking it one day, one hour, sometimes one minute at a time. 🤍

And that little bit of normal life we got to have for those three weeks? I’m holding onto it. Because even the smallest moments of feeling like us again mean everything.

#autoimmuneencephalitis #chronicillness #mecfs #millionsmissing #caregiver by @arwe_nessa

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a month ago

For over a month, I really thought I was getting better.

I started doing things again. Driving. Getting out of the house. Going to the river. Spending more time with my family. Making plans. For the first time in a long time, I started letting myself believe that maybe the worst of this relapse was finally behind me.

And now I’m doing badly again.

That’s one of the cruelest parts of living with a severe relapsing illness. It isn’t just losing your health. It’s getting pieces of your life back, beginning to trust them again, and then watching them disappear.

Right now my world has gotten small again. A lot of time in bed. Severe exhaustion, sensory overload, derealization, psychosis and cognitive problems. Things that felt possible a few weeks ago suddenly feel impossibly far away.

But I’m trying very hard not to let this chapter rewrite the entire story.

Because the last month happened too.

I did improve. I did get pieces of myself back. My body showed me that those abilities are still in there somewhere, even if I can’t reach them very well right now.

So today I’m grieving. I’m scared. I’m exhausted.

But I’m still here.

I’m going to keep believing that a bad turn in the road is not necessarily the end. by @arwe_nessa

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a month ago