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.