August 23, 2017


My Sweetie and I took an eclipse road trip and it was AMAZING! We make a great team with superb catering* and really enjoyed having two solid days together. The drive down was mostly easy peasy if long, with a nice break to visit a friend in Centralia, WA. We stayed in Corvallis, OR, in the backyard of someone from my online knitting group.
Sunset Aug 20th, just south of Portland
The six of us hung out in the back yard Monday morning watching the eclipse and playing with shadows. As the eclipse progressed it gradually got cooler, the light got strange and dim but still directly overhead, and it was unlike anything else. Totality was incredible and unique and felt too short. As the eclipse ended it seemed like early morning as the light and temperature increased. And then it was a normal summer day. 
After the eclipse we poked around Corvallis a little, napped in a hammock, fed ganache to our hostess' daughter, then packed up and headed home. It was perfect. My body cooperated pretty well and I felt like I had a break from being sick for a day.**

Sweetie and I stare at the sun just before totality.
wearing our eclipse glasses of course

You can't see anything through eclipse glasses so be extra impressed by this selfie.

What my phone saw during totality
Leafy shadows acting as cameras obscura
Afterward I got a little silly with a nibbled leaf-turned-pinhole camera.
eclipse shadows on Tacocats forehead

Driving home was not as fun. I navigated us on side roads to avoid the awful I-5 traffic until north of Vancouver. Then it was a long slow slog for 130 miles until past Tacoma. It was fully nighttime so Sweetie napped in the back seat while I drove much of that. I'd brought a quilt and pillow and made a nest for him. My self care techniques are appreciated by healthy people too :)

I'd cleverly placed the stereo aux cable out of driver's reach so couldn't connect my phone for driving music. Instead I played "how long until the Subaru notices its headlights aren't on?" (40mi). And quietly sang whatever song came into my head. And talked to traffic and other drivers. And cruised through the radio stations a few times. Finally I pulled out my phone and played music with it sitting in my lap. You know you've found your match when he thinks all the above are adorable.

We got back to Seattle at 2:30am and quickly fell into our respective beds. Yesterday I had a rest day. And now we're firmly back to normal life, albeit with a reminder of how magical and surprising life can be.

* Black bean burritos with chili-lime-cilantro brown rice, banh mi with spicy sausage and homemade pickled vegetables, strawberries, plums, lychee, cold brew coffee, and dark chocolate ganache.

** YAYYYYY!!!!!!!!!!

August 14, 2017

Rheumatology update

Awesome Rheumy is back and I had an extremely positive appointment with her in July! She had some questions for my hematologist before prescribing new meds. So I waited, and waited, and got tired of waiting and ran around kicking butts into gear, then waited more. Did you know it's almost impossible for two specialists to actually talk to each other?

In late July I was once again hit with the dizzy stick plus some other neuro symptoms. Poor memory is among them so I don't have a symptom list. AR was told and squeezed me in for a visit two days later. At that appt she prescribed Imuran/azathioprine, an immunosuppressant also used after kidney transplants to prevent rejection. Hallelujah!

I officially have systemic lupus now, which should ease treatment hurdles in future. SLE carries much more weight than Undifferentiated Connective Tissue Disease. The azathioprine is treating me very well so far, no increase in nausea, and I've titrated up to the full dose.

My emotions have been all over the place since June but finally seem to have leveled off. It feels great to have a doc who has the ability and desire to diagnose and treat me. She believes we can achieve remission, that it's a matter of time and finding the right meds. And my neurological issues will resolve as the level of inflammation in my body is reduced. 😁
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