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Julia

@arwe_nessa

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⚔️ Norse Pagan
🛹 Skater soul | Goth glow
📷 Mirror truths + Dead poet lines
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Actemra and Darzalex represent what feels like my final major line of defense against treatment-resistant autoimmune encephalitis, and it’s even being used off label in MECFS.

These aren’t ordinary treatments. They’re powerful immunotherapies that target different parts of the immune system. Actemra blocks IL-6 signaling, while Darzalex targets CD38-expressing cells, including antibody-producing plasma cells.

Using these medications in autoimmune encephalitis is an experimental, high-risk approach with limited clinical evidence. The potential consequences include serious infections and profound immune suppression, particularly when combined with other immunosuppressive treatments.

This is how far my disease has pushed me.

I’ve exhausted many conventional treatment options. I’ve endured years of suffering, failed therapies, and devastating neurological decline. I’ve fought through insurance denials and enormous obstacles to access medications that many patients with my condition may never have the opportunity to try.

This isn’t simply another treatment. To me, this is my last major therapeutic stand.

And the most frightening part is that even after everything I’ve fought through, nobody can promise these medications will work.

I don’t know whether the man I once was is still buried beneath all this brain inflammation. I don’t know whether I’ll regain my emotions, my memories, or the ability to fully experience life with my wife and son.

But I fought like hell to reach this point, and I’m going to give this chance everything I have.

I just want my mind back. I want to feel alive again.

If there’s still a way back to myself, I intend to fight for it. My wife and son deserve that much from me. I would rather die on my feet than live on my knees.

I do not fear the final battle. I fear leaving this world without giving everything I had..

I faced this disease with everything medicine could offer, endured treatments that pushed me to my limits, and fought like hell for my life. Whatever comes next, let it be known: I never backed down.

#chemo #mecfs #spoonie #longcovid #autoimmune

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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

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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

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🛡️💔

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

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Hope is lost but I can’t let go 💔

#millionsmissing #encephalitis #autoimmunediseases #depression

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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.

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I don’t know what the future holds with this illness. I know how sick I am, and some days that reality breaks my heart.

But beneath all of it, I am incredibly grateful.

Grateful for my wife—for loving me through versions of myself I barely recognize, for carrying things when I can’t, and for still seeing me underneath all of this.

Grateful for my family. For the people beside me when my world has become painfully small. For the ordinary moments that illness has taught me were never ordinary at all.

This illness has already taken so much from me, and I don’t know what else it may take.

But it does not get to take my choice to stay here with them.

However small my world becomes, however much of myself feels out of reach, I will keep choosing another day with the people I love.

Most days, I only have a short window where I’m awake, mentally present, and able to truly be with the people I love before my neurological symptoms overwhelm me and I drift back into sleep and confusion.

So I give them every bit of myself I can while I’m here.

As long as I can be present with them, I will be.

I’m still here. ❤️

@arwe_nessa I love you with all my heart, I don’t see a way out of this but I will keep fighting for you ❤️🛡️

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@arwe_nessa No matter how small my world becomes—confined to a bed, trapped in a dark room, losing my personality, my sense of humor, and everything that once made me feel like myself—even if I become only a shell of who I was, I will stay for you.

I’m sorry this is the life you’ve been dealt. I’m terrified, lost, hopeless, and in pain. This is a battle I’m afraid I may not win—but as long as I am here, I will keep fighting to stay beside you. I will not willingly surrender the time we still have.
#stoicism #viking #resilience #depression #acceptance

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I don’t know how this story ends. But I’m still here, still fighting, still trying treatments, and still leaving room for my life to change. As long as I’m here, I haven’t lost.

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Every scar is evidence I refused to surrender.
I remember who believed me, who called me broken, who disappeared when I needed them most, and who decided my fight wasn’t worth standing beside.

#mecfs #chronicillness #stoicism #resilience #defiance

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Rest now 🛡️
#chronicillness #stoicism #darkfantasy #depression #acceptance

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They approved the regimen.
Cyclophosphamide. Daratumumab. Mycophenolate mofetil.

Serious drugs for a serious war.

This disease has burned through my mind, my body, my sleep, my peace, and my future.
Now we answer it with everything.

If these drugs tear me apart before they put me back together, so be it.
I’m done fearing suffering. I already live with it every day.

I would rather go out exhausted, scarred, poisoned by treatment, and still fighting than slowly rot into nothing while calling it acceptance.

I hope what remains is not the memory of suffering, but the love I gave, the people I held onto, and the proof that even broken souls can endure the storm and still leave warmth behind.

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