At 40 years old I am fighting for my life. I feel like I’m watching my life go by from the sidelines as I keep cheering myself on. I tell myself pushing through all the bad outcomes is my only option because surely it will get better. But it hasn’t.

I’m at the end of the road for trial and failures on all available therapies. Doctors have told me this last therapy is truly the only one left. I have had one infusion of Saphnelo and sadly, I’m already feeling the effects of almost all the warning signs on its label, which is not the outcome I was hoping for. This doesn’t look promising, although I’m trying to stay positive.

My only advice at this point is to remember who you used to be, Sarah. This is not over. The never ending battle that once seemed hopeful, with a long road of therapy options available, has now come to an end as I finished my LAST first infusion of options for this gut wrenching, awful, ugly disease. Read that again. Let’s just call it what it is, really. Crossing my fingers, toes, and braiding my hair. Let’s do this. At least let’s try.

I just hope and pray that the day comes when my coffee tastes like magic again, and my playlist makes me dance again, and the night sky touches my soul like it used to. I want to fall in love with being alive again.

Fuck you, SLE. 

XO,

S