August 23, 2014

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.

August 19, 2014

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."

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.
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