February 22, 2017

Refractory disease

I'm all but diagnosed with treatment-resistant CNS lupus. Next week we will mine my brain to determine how great the impact is, then begin an immunosuppressant medication. The super targeted approach has failed and it's time for bigger guns.

I'm so used to accepting my reality as normal that I forget how abnormal this all is. I've become isolated by higher fatigue and the frequent inability to drive. But I don't know how to talk about the fact that this disease is winning, especially as I work so hard to hold things together. I don't want to live the rest of my life jumping from medication to medication as they all fail in turn. Yet I don't see another option.

In the meantime, I'll keep knitting. I cast on Morvarch Jan 1st and have been diligently knitting since then. The interesting bits are mostly done, now it's a long stockinette march to the end.

The yarn is "Emerald City" by Hazel Knits, it looks like evergreen trees :)


  1. That is beautiful. Don't you hate that march to the end?

    1. It is a march! I can knit stockinette while reading, that should speed things up a little.

  2. I hold you in my heart. Your words are so beautifully put, like your intricate knitting. My very best to you.

  3. You are creating, you are contributing, you are alive. One day at a time, I guess? That piece is so lovely.


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