Very Short Post

Because if you can't say anything nice, don't say anything at all.  2014 was long, difficult, lonely and painful.  I can't look forward to things being any different in 2015.  There were some bright spots, but not enough to overpower the dark ones.  So much for another year.

Heart, Hands, Hawaii and Holidays

In the biggest news, I went to Maui for a long weekend in early December.  It was beautiful, and I was sad to return home.  This is the only vacation I can remember where I imagined chucking it all and staying there.

 

I was only back for a couple days when I had to get an echocardiogram (heart ultrasound) and 48 hour Holter monitor.  The echo was a breeze, the monitoring was miserable.  I'm allergic to the adhesive and electrode gel, so the whole test period was itchy, painful and overall unpleasant.  But at least it's done.  The follow-up showed nothing bad, which is frustrating but better than OMG your heart's going to explode!!!

Fatigue has been kicking my butt up, down and sideways.  My hands and joints have been increasingly painful and fumbly, so I'm getting little knitting done.  I don't know how to think of myself now that I can barely make anything.  Being a Maker was such a big part of my identity.

And lastly, holidays.  I'm mostly alone this year, as friends have moved, moved on, or can't understand or cope with how sick I am.  I may look ok, but I am very ill.  I do have a couple family events, and hopefully I'll be able to attend and enjoy those.  Wishing everyone reading a happy holidays and happy new year.

Perfect Cranberry Sauce-Relish

I invented this recipe last Thanksgiving, when I was unable to decide between the gorgeous ruby color and thickness of cooked cranberry sauce or the crunchy freshness of raw relish.  Here you have the best of both worlds!

Summer's perfect cranberry sauce-relish

1 bag cranberries (12 oz)

Juice of 1 orange, or 3-4 tangerines

Zest of 1/4 orange or 1 tangerine

Sugar or honey to taste (~3/8 cup)

Water

Blitz the cranberries, juice and zest in a food processor until finely chopped.  But not too finely.  Last year I used a Valencia orange, which was delicious, but this year I made do with tangerines I had on hand.  

Put half the cranberry mixture in a small saucepan and add a splash of water and the sweetener of your choice.  Bring to a simmer and cook for approx 10 minutes, stirring often as the pectin works its magic.  Keep adding splashes of water as needed, so the sauce doesn't stick to the pan and burn.  

Remove from heat and stir in the uncooked cranberries.  Taste and add more sweetener or zest as desired.  Remember this is supposed to be a tart dish.

Serve and bask in the adulation of all present.  For you have conquered the ferocious Cran Berry.

Salmonberries in Winter

I finished this sweater in June, at least the knitting of it.  I found buttons for it a couple weeks ago, and here it is!  Just in time for winter :)

This sweater took F O R E V E R to knit, but it's done and full of cozy squishy warm alpaca/wool goodness.  Salmon berries are a delicious local berry, and seemed the perfect descriptor.  The bumpy stitch pattern on the inner sleeves and back is blackberry stitch, so there ya go.

Photo from June

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.

New Project

My friend Laura at Dragon Wing Arts designed the pattern for my latest knitting project, an Outlander-inspired bulky shawl.  It's a perfect quick, portable knit.  Between the Tulpenkraz lace, and the Bohus-inspired sweater which I have yet to calculate stitch counts for, my projects are very ambitious.  Add a week-long cold to the mix and this shawl is perfect.

I pulled out some burgundy singles yarn, formerly most of a baby sweater but I think the recipient is about to start college!  I'm about 1/3 finished and it's working up well.  The lace edges will show more once it's blocked.

Marysville

Hey, so part of today was horrible.  There was a school shooting north of Seattle, another one.  I actually saw the medevac helicopter fly over my apartment, on its way to Harborview.  Somehow that just makes it worse.

I wish people would stop hurting each other.  Isn't there enough pain and heartache in the world without adding to it?  I'm not very coherent in my sadness, but I feel it's still important to say something.

I listened to some beautiful string music tonight, with new friends.  That part was very nice.

Happy Humira Tuesday!

This morning FedEx delivered my first dose of Humira.  A large box arrived with a styrofoam cooler, dry ice, and an surprisingly small box of 2 Humira injector pens.  And so much paperwork to send back to the specialty pharmacy, ugh.  Don't breathe in the dry ice, kids, it can kill you (fun fact: the body regulates breathing based on CO2, not O2).

I'll use one injection every other week, and won't expect to feel any change for at least a couple weeks.  I'm an old hand with injector pens, after years of Imitrex, so that part's easy.

And next month, just in time for Halloween, I'll get another delivery.  Maybe I'll be feeling well enough to carve a cool Jack O' Lantern, or find some other fun use for the dry ice.

Knitting in my DNA

Or rather, my DNA in my knitting!  My hair is now long enough that stray strands are knit into my work, especially the blanket.  I wonder what a future owner might conclude about me by my hair or DNA.  I did a little mental auto-anthropology when this came to mind ;)

The blanket so far

I've almost finished the blanket's fourth column of six squares, which leaves the fifth and last column plus the border.  It may get a simple dark grey edging, or something fancier like a color blocked rainbow border.  We shall see.  I'm also waiting on more light grey yarn, which is backordered, and hoping the dye lots match well enough.  With autumn weather having arrived, I was snuggled under it today while knitting.  Nice and warm.

With a cat for scale

The color placement should look more even and random once the last column is on.  I hope...

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.

Thoughts before an important appointment

On Tuesday I see my rheumatologist again and it's a pretty big deal.  I've failed the first four medications we've tried, though I prefer to say they failed me, and thus have exhausted the category of medications which suppress the immune system.  The next option is a biologic pharmaceutical, which are grown rather than chemically produced.  These are proteins or antibodies which the body normally produces, and will hopefully kick my immune system's ass.

Last week I had a vivid dream that the appointment did not go well.  Dream logic stole in and took my voice, then abruptly transitioned to out in the hall with the appointment over.  The conclusion: two more months of the current unsuccessful med, which sounds like more purgatory than I can take.  It was scary enough to wake me up.

I'm also worried about how long it will take for insurance approval.  Biologics are expensive, around $20,000 per year.  While I meet the criteria on paper, getting actual approval is always more difficult and time consuming.  After that, weekly injections sound easy!

The weekend I've had fatigue so thick that standing feels more like climbing Everest.  Here's hoping that the appointment goes well, I get a new helpful med soon, and can start getting my life back.

The Lace Deep End

I have fallen down the Niebling rabbit hole.  You may have never heard of Herbert Niebling, a 20th century designer of intricate lace knitting patterns, but lace knitters know.  For years I had resisted the siren call, which honestly wasn't difficult as getting your hands on his patterns is tricky.  Thanks to a former-East German printing house, and Amazon (.com, .de, .uk), I bought a pattern booklet online.

The pattern I'm using is Tulpenkranz, or Tulip Wreath.  It's going to be massive: my conservative estimate is 2.5m in diameter.  The original pattern calls for #200 crochet cotton, which is half as fine as sewing thread and no longer produced.  I'm using laceweight wool/silk yarn.

c Buch Verlag für die Frau, from Kunstrick-Decken

So far I'm almost 10% done.  A photo from the weekend shows the tablecloth-to-be fetchingly worn as a hat.  I'm enjoying the project so far!

Neat fact: the German term for lace knitting translates as "art knitting."

Summertime Update

Seattle is having a bona fide heat wave, days and days of weather in the 80s (~30C).  The next couple days are supposed to hit 90.  I have a really hard time with hot weather--this is why I live in the Pac NW!  Hey Marseilles, my favorite local band, is helping make things bearable.

I've been really sick.  I've been recording health data, and had to increase the lack-of-energy scale.  I started another new medication last month, but so far it's not helping either.  It really really sucks.  This state of affairs is scary.

I have been knitting a blanket, and that's going well.  I'm 30% through it, so I may yet tire of blanket knitting ;)  If not, I have an idea for the next one.

The blanket so far, first full strip folded over on itself

Illness and Grief

Not the most uplifting title, but it does get to the heart of the matter.  Every time my health worsens, I grieve all over again for the things I'm missing.  This process becomes less difficult with repetition, similar to a romantic breakup.  It's never easy, however, and it's always unexpected.

At the end of 2013 and into early 2014 I was doing better, able to get out regularly.  I had hope for the longer term, for the first time in years.  Then the bottom fell out.  I have so much widespread pain that it threatens to subsume me, and the fatigue has me practically homebound.

The fierce amount of mental energy required to cope with the pain is staggering.  Perhaps people without chronic pain don't understand this concept, how many mental resources are marshaled to push the pain below a conscious level.  The pain is still there, of course, but not always at the forefront of my thoughts.  The more pain, the more energy is required to attempt block it out.  The more pain, the less successful this attempt is.  On bad days I can't concentrate enough to watch a movie; I was a National Merit Finalist.

This weekend was the commencement of another round of grieving.  I thought I was doing ok, that I was just too sick to miss life.  Then the longing for meaning, purpose and connection crashed down on me.  Maybe this should be filed away in my journal rather than posted here, but I'd like to help others understand even a little.

Fatigue

There have been some big changes in my life, even more of them.  I don't know whether I needed to let it all sink in, or find a way to express myself, but I hadn't feel ready to talk about it until now.  I have a new doctor, and we've discovered that my autoimmune disease is a type of seronegative spondyloarthropathy.  More specifically, Psoriatic Arthritis seems to fit, a condition where the immune system attacks soft tissues and joints.  It's similar to Rheumatoid Arthritis.

My most disabling symptom for years had been pain, but in the last few months fatigue has taken over.  This isn't just feeling tired, or being drained by pain.  This is a whole new level of fatigue, where merely standing is difficult and my thoughts move like molasses.  It has also caused muscle weakness, dizziness, joint pain, and impaired my thoughts and memories.  I am rarely able to leave my home except for medical appointments.

I don't know what the future holds.  I felt positive a couple months ago when I finally got a diagnosis.  Now I just wish I was able to function enough to enjoy life.  I'm grateful to have caring friends who I can keep in touch with online.  I have loving family.  And I'm still able to knit.  I've completed a few knitting projects and hope to share them, health permitting.

Open Letter to Prednisone

I am awake due to painsomnia, so you get this treat:

Oh prednisone, I had such hopes for you. I was flattering and appreciative, believing we could build a positive working relationship. You were far from perfect, but I understood that everyone has their flaws. What’s a little insomnia when your joints actually work? But now…painful breasts, GI-baby bump, hot flashes, the appetite of a 200lb man. As soon as Tuesday rolls around, consider yourself dumped!

Tuesday is when I see my rheumatologist again, that paragon of autoimmune intelligence, and hopefully she'll have some better treatment options  Prednisone isn't the worst boyfriend ever, but it is high on the list. If I'm incredibly lucky, she may actually have a diagnosis!

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!

Friday Night at the V&A

You may have noticed that I didn't finish my London Travelogue.  Adrenal issues and autoimmune flares got in the way.  But I did want to share a magical night:

Friday was spent at the Natural History Museum, one of my favorite places on earth.  It was a welcome Cathedral to Science after the ostentation of monarchy and aristocracy.  Personal endeavor and accomplishment!

Natural History Museum

Then I met back up with my mom and we headed next door to the Victoria and Albert Museum, aka the V&A.  They have the most gorgeous cafe there, which we happily stumbled up.  Need a rest and a glass of wine?  This is the place to go!

V&A

Now picture a grand piano between the pillars, playing the most enjoyable and relaxing music, while you relax with excellent company.  These are the moments I love in life, where fortune smilingly gifts something wonderful which I could never have imagined.

Back in the museum proper, a fashion event was taking place.  A DJ was spinning, well dressed students were mingling, and there I was in the middle!  Viewing Trajan's column while reggae drifts through the museum is an incredibly cool way to end a week.