March 12, 2017

Grief, Acceptance, and Deja Vu

I haven't written in a while. Expressing coherent thoughts has been very difficult the last three months. And I've been going through the same freaking grief cycle yet again. I get sicker, I lose parts of my life, I can't accept it but have to live with it. Rinse and repeat.

Making gains means any subsequent loss has already been processed, right? Hahaha, no. It's more grief, this time with the fun twist of knowing what the future holds.

I'm getting too dizzy to continue so I'll sign off. Life feels exhausting right now. Maybe by morning I'll forget how far removed this is from the norm. Denial is a big coping skill.

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 :)

January 16, 2017


My goal for 2017 is to be unafraid. Despite politics, despite attacks on healthcare that directly threaten people I love, despite my own health issues. I know I will survive because that's what I do. I choose to face the future, unflinching and unafraid. That's how I can honor Dr King's legacy.

December 21, 2016

Scary brain stuff

Before Thanksgiving I had a Benlysta infusion that triggered many neurological and cognitive symptoms. It was scary and still is. My rheumatologist ordered a brain MRI which thankfully showed no structural abnormalities. I saw her yesterday and we're testing for CNS lupus. That involves ANA labs and neuropsych testing once insurance approves.

If there is CNS involvement, which seems likely at this point, I'll stop Benlysta and start something stronger. Like everything else in autoimmune disease, this involves a trade off: greater risk of infection and more side effects for less Brain Wrong (my highly scientific term).

I told my Sweetie what's going on, that was hard. I don't want him to see me primarily as a sick person or to worry. He's been very supportive. I haven't told him my theory that autoimmune disease attacking my brain makes me an auto-zombie, it feels too soon.

Ella snuggles have helped
I had a Benlysta infusion yesterday and if that kicks in I'll start feeling better tomorrow or Friday. If not, eh, I will muddle through.

Positives, because I like to end on an up note: 
  • I have a fantastic new rheumy
  • I still have friends despite being sick most of the last 3 months
  • Sweetie--I can't believe my luck
  • My mom, who's been great.
  • Internet knitting friends :)

December 16, 2016

Tiny Forest's Debut

I finished five tiny trees in time to gift them to my mom yesterday. She liked them very much and laughed. She also thought the pink tree was a lightbulb so take her reaction as you may. Better photos will be taken in their forever home. Maybe.

Presented for your amusement

The last tree was knit while playing pub trivia and in the stark light of day it has a distinct yet inadvertent Seahawks/Sounders vibe.

MLS champs get their own tree?
I used the Pint Sized Pines pattern. The only change I made was to work the Double Cabled Tree's decs in Row 24 as *p1, k2tog, p1, ssk* around so they matched the direction of the cables they perch atop. Because yes, I do notice stuff like that ;p
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