I have learned the power of "Spoon Theory" to explain my daily energy ration. I have learned that "no" is a complete sentence when the warden demands too much. I have learned to find a strange, defiant peace in the quiet days.
I am grateful for the guards. But I do not trust them. You might be wondering: Why stay? Why not escape?
Then there is Prednisone. Prednisone is the violent guard. It breaks up the fight, yes, but it also trashes the cell. It makes my face moon-shaped. It makes my bones brittle. It gives me the energy of a cornered animal at 3:00 AM, followed by the crash of a hostage negotiator who failed. lupus detention house
Plaquenil (Hydroxychloroquine) is the silent guard. It stands in the corner, doing its job quietly, trying to calm the riot. I don't see it working, but I know the horror stories of what happens when it leaves.
Advocate for yourself. Fire the doctors who act like cruel guards. Find your cellmates (support groups) who know the secret handshake. I have learned the power of "Spoon Theory"
There is a specific kind of exhaustion that comes from living in a detention house. Not the kind you see in movies—with orange jumpsuits and metal clanging—but the kind that lives inside your cells. I call my body the Lupus Detention House .
You learn to walk on eggshells in a house made of landmines. The cruelest part of this detention isn't the joint pain or the "brain fog" that makes me forget my own zip code. It’s the solitary confinement. I am grateful for the guards
Because escape isn't an option. You can't run away from your own DNA.