July 13, 2014

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

March 30, 2014

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.

March 22, 2014


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.

February 1, 2014

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!

January 25, 2014

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 :)
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