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ᚨᚢᛋᛏᛁᚾ (Austin)

@skolborne

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⚔️ | Refractory AE
🔒 | @arwe_nessa
Echoes of a fading mind. 🧠

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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. by @skolborne

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2 months ago

Rest now 🛡️
#chronicillness #stoicism #darkfantasy #depression #acceptance by @skolborne

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3 months ago

My life is slowly disappearing into the four walls of my bedroom. I’m becoming increasingly bedbound, waking only a few times a day, often just to use the bathroom before returning to bed.

I can barely hold my own son most days. Going outside is excruciating. Even thinking can become unbearable. My mind feels like it’s slowly fading, and I’m losing the ability to do the simplest things that once made me feel human.

My neurofilament light chain (NfL) came back extremely elevated. NfL is a structural protein found inside nerve cells that is released when their fibers are injured. Elevated levels can indicate ongoing neurological damage and are seen in conditions involving neuroinflammation and neurodegeneration/brain damage.

This truly is a fate worse than death. by @skolborne

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3 days ago

by @skolborne

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6 days ago

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 by @skolborne

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9 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 @skolborne

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19 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 @skolborne

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21 days ago

This illness has already taken so much from me. My independence, my memories, my strength, and countless moments with the people I love.
I have fought battles no one could see and endured darkness I never imagined possible.
But I refuse to let this illness take my dignity, my love, or the right to have a voice in my own life.

Whether my peace comes in this life or the next, I will have fought for it with everything I had.

Should my last two treatments fail, then I can go out proudly knowing I’ve fought with all my heart, my strength and my soul.

#vikings #mecfs #autoimmuneencephalitis #braindisease by @skolborne

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24 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 @skolborne

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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 @skolborne

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a month ago

I will always love you Thoren. 🛡️🖤 by @skolborne

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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 @skolborne

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a month ago