Happy Thoughts

It's been a week. I won't dwell on my fears. Instead I'll share some positives.

Last Monday I visited a friend in Centralia (85mi south). She made me two beaded shawl pins to match my Watermelon Daybreak shawl. I knit on it while we sat together in her husband's hospital room this May.

I've worked hard to make a good life and to become the woman I am. I'm lucky enough to have assembled a team of friends who genuinely like me and I even have a sweetheart :)

Plus I live in a city where even the sidewalk gardens can be motivational:

Hang in there

Jake Update

Jake is doing better! Prednisolone is magic: it shrunk the nasty thing growing in his nasal passage and throat. His breathing sounds almost unobstructed and he got his squeak back :) It's also boosted his appetite so he's gained weight. All the treats he's getting certainly help!

More treats pls

I don't know how much time steroids will buy him but I'll take it. Last weekend I thought he had about one good week left. Now it may be more like weeks. I'm taking advantage of that time by doing perfectly wonderfully average things with Jake.

Summer has a Sweetheart

I started dating again in December, leading me to meet such jewels as "Drunk Texter" and "Pee pee pants." I dated someone for a few months which ultimately resulted in a good friendship. I created a hierarchy of dating nos (#1: smelly, #2: boring). I tried out some fun new bars and started to really get the hang of casual dating.

But then one guy made my heart go pitty pat. And it's mutual :) Friends say, "oh, he's cuuuute" when shown his photo. He is kind, smart, fun, cheerful, adorably awkward, and he likes me. My health problems aren't a concern for him and he hasn't been spooked by fun stuff like 24hr urine collection. It's still early but this seems to have real long term potential. Plus he cooks!

Benlysta at 7 months

I started Benlysta infusions in late December 2015. Initially I had unpleasant side effects like insomnia, intense headaches and GI upset, as well as some post-infusion fatigue. The insomnia has improved and I've found a medication that lets me sleep. The headaches faded then essentially stopped, but it took 3-4 months for that to begin. In general I've been very lucky with side effects and no longer even feel fatigued afterward.

For many months I didn't know whether Benlysta was helping, or whether it could help. It's approved for lupus but what I have doesn't fit into a tidy diagnostic box. I'd have days or weeks of decreased fatigue or joint pain, but was that coincidence or the treatment? No way to be sure. There were also weeks or months where I felt like I'd had no treatment. The rollercoaster nature was intensely frustrating.

But at 7 months I can say that I do feel consistently better. I have much more energy: I've made friends and get out many times per week. I can stay awake all day, clean my home, and run errands without hitting a wall of pain and exhaustion. Joint pain has improved enough that I can walk reliably, and I've been taking the bus much more frequently. I've been dating with success. Benlysta has given me hope for the future.

Happy Solstice

Saturday I went to the Fremont Solstice Parade with a couple friends. It's famous for the pre-parade of naked painted bicyclists. I had never been, which is embarrassing to admit.

Wonder Woman!

There were many rainbows

Last night I headed over to a local beach to enjoy the longest day of the year. I posted an invite in my local Girl Crew group and invited friends. There were 5 of us, and we joined a couple with an impressive fruitwood fire. We had a great time! The rain even waited until we were leaving :)

Last light behind the Olympic mountains

Puget Sound at Solstice sunset

Summer's Sunsets

I have more energy late in the day, so I've been spending pleasant evenings in the park during Seattle's current hot spell--it was 94 on Sunday! Yesterday I managed to climb all 107 steps of the water tower, which has amazing views.

Friday's sunset over the reservoir

Sunday: I love the cloud formations!

Just at sunset, also Sunday

May 17th

How to be a Superhero

Yesterday my hand pain was so high it almost brought me to tears. Despite that, I attended a new knitting group. On the way home I stopped and climbed the Volunteer Park water tower as the sun was setting. It was beautiful!

The sun sets behind the Olympic mountains

Then I got home and did laundry--before Benlysta even one of the day's tasks would have been too much for me.

Today I drove to Olympia to visit a friend whose very ill husband is in the hospital. We were good friends already, but today she said I'm one of her best friends. That is an honor to hear, to be allowed into someone's life and heart like that. Knitting is such a great hobby in these situations: you can just sit and knit and talk. We also checked out a nearby bakery and bought almost one of everything ;)

Chronic illness has taken a lot from me but it's given greater compassion and understanding. I also have days free, when fatigue allows, to spend with friends. These are amazing gifts, however painfully earned. I feel superheroic successfully battling the forces of grief and isolation.

Another Blanket

I finished this blanket before New Year's, but my photos were bad. The recipients were kind enough to take more pictures in their non-blue drenched home and I present: 

New Rings Grow Warm

I worked on this pretty consistently for four months, not-so-cleverly beginning a month before the wedding. The edging, while gorgeous, was grueling: it's patterned on every row and is almost impossible to memorize. This was nicknamed the Hell Blanket before it was done, but once blocked it sat there looking so pretty and impressive that all was forgiven. And they loved it :D

Road Trip

In late Feb I took a short trip to Centralia to visit an internet friend. It's a pretty short drive, 1.5 hours, but that still took a toll on me. I planned two days for the visit and got a motel room, an excellent plan.

We had a tea party the first afternoon, then sat and talked for hours. It's so nice to meet and talk in person with someone you have so much in common with. We're both knitters and also have chronic health issues.

The next day we walked around historic Centralia, it's a cool place. There was a little park full of blooming crocuses!

Her husband was hospitalized a couple days before my visit, so before I left town I stopped to say hi. Thankfully he's feeling better and is back home now. I'll just have to make another trip to see them both at home :)

Hawaii Vacation Part 2 (of 2)

I am back home from Hawaii, where I had a fabulous time!

Kona sunset watching/beach knitting

The Benlysta seems to be working, I had an energy bump that lasted until the second-to-last day! Realistically I should call it a period of diminished fatigue, but energy bump sounds better. Also my skin was less irritable and overall I was less swollen :) Ankles-not-cankles, woo!

But back to Hawaii:

Gecko on my balcony!

Warm and breezy

INSIDE the Kona airport

I would enjoy flying more if all airports were like Kona's.

Coffee plantation

Kona Brewing Co's Big Wave Ale with pizza

I tried several varieties of Kona Brewing Co's beers. My favorite? Da Grind Buzz Stout, which they don't appear to bottle. Black Sand Porter was also quite tasty.
I saw people drinking Bud Light--really? REALLY??? Let me buy you a Longboard.

The sunsets were amazing

Sunsets were beautiful, also a time when I could hang around outside without sunscreen ;) It did confuse me to have the sun setting at 6pm--the warm weather tricked my brain into thinking it was summer, when it stays light here until after 9pm.

I'm in Hawaii!

Aloha! I flew into Kona, on the Big Island, last night. It's so beautiful here, and warm and sunny and green. But once again I'm wishing my body contained more melanin ;)

Best of this morning's bad photos

This morning, albeit not first thing, I headed to the beach. I sat on the beach for a few minutes to warm up before jumping into the slightly chilly water. There I got chatting with another woman and made a friend :) Even better, she has tomorrow off work and wants to hang out. Meeting a local on Day 1 is fabulous!

I plan to walk around more and explore later today, there's quite a bit within easy walking distance. This morning's lobby coffee shop latte was disappointing, but I found a Yelp 5 star joint close by :D

View from the hotel balcony

Mahalo for reading. I'll have more photos soon.

Christmas Miracle

I've mentioned that I have a friend staying with me over the holidays. Unfortunately, this friend got a cold starting the second day. Very sad :( But even worse is that I'd just started a new biologic, which greatly increases risk of infection, and I already get sick at the drop of a hat.

But...I didn't catch the cold! It's amazing!!! I wasn't sick for Christmas, I'm not sick for New Year's Eve, I'm not sick and thus have to skip the second Benlysta infusion. None of it. Now that is an excellent way to start 2016!

Remembering why I love my neighborhood

With the huge amount of ongoing construction in this city, and the general human resistance to change, I'd started to forget why I love my neighborhood. Plus my health...stuff. Then today I marched to protest skinheads, where I ran into a neighbor friend and was complimented on my "full-Seattle" handknitting skills (I wore my rainbow mittens). Later I headed to a local pub for dinner and a beer, striking up a conversation with someone who has also tried and failed to make Classics of Science Fiction book club meetings that are held down the street. I chatted with the bar manager, finished the first section of my book, and walked a whole two blocks home.

Oh yeah, this is why I love my corner of Seattle! It's because I feel like I belong, and I actually know people in the community. I'm so glad for the reminder!

PS: Peaceful protesting is awesome, even in the rain. I'm going to have to do it again. I had to skip out early, my ankle was starting to give out, but even that was no big deal.

Best Thursday Night

I was chilling last night, drinking tea while eating chocolate-covered shortbread, knitting and watching the Sam & Dean sexy hour (aka Supernatural).  A friend called and asked what I was doing, and I told him.  He replied that that sounded amazing and I had to agree.

Sometimes your best life is relaxing and ignoring the negatives, even just for an hour or two.  I've had some pretty fierce jaw pain the last month, and skin issues, but in spite of that life can be pretty good.  Instead of noticing the ways I accommodate chronic health problems, which would be a very long list, I'm choosing to focus on the positives.  I have a safe and warm home.  My power didn't go out even during our recent wind storm.  I have friends.  I have internet to connect with many of those friends.  And I love and am loved.

I'm also making good progress on the wedding blanket: almost halfway done with the edging.  I think it's going to be beautiful.  And warm :)

Wise words from a friend

Yesterday I read a beautiful blog post by my friend Byrd.  She is also living with chronic illness, and offers her unique and valuable insights.

Here are some observations Byrd has about folks with chronic illness:

"We are wise.  We are funny.  We have marvelous insights.  We see things in a different light.  Because of what we have faced, we value kindness, thoughtfulness and consideration.  We value things that make the world a better place without taking away from others.  In fact, what we value Adds to others.  We are complete."

She is also an artist with work on Flickr.

copyright http://byrds-words.blogspot.com/

Welcome 2015, from my happiest place on earth

London's Natural History Museum says hi.

copyright National Geographic

I'm sitting in a warm room, with a cat on my lap (and half on one arm), so things are pretty decent so far.  Having only visited one natural history museum as an adult, it's my happiest place on earth.  I should try virtual tours of the Field Museum and Smithsonian.  Then I can have multiple virtual happiest places :)

Earlier I was browsing my bookshelves and realized that it's like having a bookstore in my home.  Curated by me!  I should start looking at more of my art and knitting books, not just them snooze on my shelves.

Happy New Year to everyone, and Stay Sciencey!

Someday

On the hardest days I imagine an afterlife, free from pain and loneliness.


Someday I'll take a trip.  A fabulous trip, far from familiar sights and sounds.  The kind of trip you spend a lifetime dreaming of but never think will happen.  At the end of the journey I arrive in a village of everyone I've ever loved.  There isn't a rush of hellos, just a quiet walk as I meet every loved one who traveled before me.  At the edge of the village, a cottage of my own, with a bee loud glade and flowers blooming around every corner.

The first afternoon I climb the highest mountain, easy as cresting a hill, and view the whole valley crumpled below like the lines on my palm.  Winds gust up the mountain peaks and I fall into one, riding it down to the green valley.  I lie in a sunny field among high grasses and wildflowers, soaking in the warmth.  Every happy summer day that came before was but a shadow of this pleasure.  Butterflies dance along my arms and perch on my hair to wish hello. As the sun sets an evening barbeque awaits, and bottles of cold lemonade are passed around, hot buttery ears of corn nibbled, and ribs cover everyone's face with sticky-spicy-sweet sauce.  The sun sets as a band begins playing and we all dance for hours under the full moon.  Our feet never tire or misstep. The moon sets and fireflies appear as we murmur to sleep on the soft green lawn.  A mother sings a lullaby and we all become her child.

Winter is Coming

*I started this a week and a half ago, but computer issues and fatigue delayed posting.  

Cold winter weather is on its way but so is a heated mattress pad. I had one as a kid and it was wonderful.  My body has become poor at temperature control, especially when I'm asleep, so this should help.  Last winter I tucked sweatpants into wool socks and slept in 3 top layers under a down comforter and quilt.  Even using the electric baseboards judiciously, I could barely move without generating scary amounts of static electricity.  Seeing arcs off your fingers is pretty bizarre.

Aside from autumn weather, I've been dealing with increased fatigue.  Daily naps are no longer optional, my body just stops and sleeps.  Insurance denied Humira coverage, which I'm appealing with the doctor's office's help.  Maybe in a couple more weeks I'll get it?  Can't come soon enough!

Update: Humira was approved!!!  Hopefully I'll be able to start in by the end of the week.  There's a pharmacy issue to sort out first.

A Walk

Yesterday I took a walk, and stumbled across Spring!  It was a gorgeous day, clear and sunny.  The Olympic and Cascade moutains were both visible, which is a treat.

Space Needle and Mt Olympus

Where you see the yellow building at the base of the Space Needle used to be a view of the Science Center arches and ferries crossing the Sound.  sigh

After standing in the street gawking at the view, I wandered over to a hidden neighborhood garden.  There I saw Snowdrops!  In January!!!

Snowdrops blooming!

Bulbs are sprouting up everywhere

It was a beautiful day, and a very enjoyable walk.  I hope you enjoyed the photos :)

New Year News

2013 was a difficult year.  But the last three months had some fantastic moments: London!, new friends, more energy!  I got my knitting mojo back, too.  So watch this space for new projects.

Then came the Big Flare.  It become clear that smaller symptoms I'd been ignoring were part of a single serious autoimmune disease.  I saw a new rheumatologist on Dec. 24 and started to get to the bottom of things.  I can't adequately express what a huge deal this is.  I'm on a bit of a prednisone roller coaster until my labs come back and we can start targeted treatment.  The pred allows me to use my hands again, which is nice.

In London I thought, why am I not seeing similar sights in my own city?  Rather than lurking around museums, I've started catching evening events.  Monday I saw a Hey Marseilles show--I have the biggest band crush on them!  Then last night I went to a reading by Karen Russell, an incredible short story author.  I brought an issue of Zoetrope in which she'd been published, and she was excited to see it.  We're Bradbury buds :)

I have great hopes for 2014!