what i’m not doing

“Most of the stuff that got us into trouble was perfectly legal…”  President Obama said that last night.  I missed him on the Tonight Show.  Sleep is very high on my agenda during this flare.  I’m sorry I missed his appearance, because I always feel reassured when I hear him speaking to the public.  I hear the voice of reason and calm, and the logic and intense concentration when he is dissecting a problem remind me that we have a smart, conscientious presence in the White House.  I sleep better.  I “rest assured”.  Love that phrase, and its literal meaning.

okay.  caps for the president, but the fingers are still stiff so i have to regress.  25 milligrams of prednisone is not removing the stiffness.  that is a worry to me.  i don’t want to go any higher.  i hate the 60 milligram blasts that make me manic.  i despise being so pumped up on prednisone that i rush around the house doing chores even as i know that i should be moving more slowly, resting more.  once i was so manic that i left my house on the sabbath (i was really celebrating it then) to go to the hardware store, and i had to look at myself closely to make sure i was wearing all my clothes.  monitoring oneself that closely is no fun, but  cruising around ace hardware choosing tomato plants was still a blast. 

i know my body as an extremely chemical entity, responding one way to x and another to y, predictable as clockwork in some aspects, an experimental subject in others.  the illusion of control-my life depends on who’s in the pharmacy. 

these are things that are not getting done while i wait for my next treatment:

1.  photographing new products and listing in store

2.  grocery shopping – although i may take a ride in the cart today

3.  visiting friends

4.  sorting out clothes and clearing my next room, the master closet

5.  trip to the post office with nonurgent returns

6.  trimming lucy’s nails

7.  vacuuming up the spilled scraps from the shredder

8.  whipping up a pile of stuff for the opening of the chattanooga market

9.  sorting completed projects into their proper bins

10. random phone calls to check up on family and friends

11. other stuff that i’m suddenly too tired to delineate

my treatment is scheduled for april 1 and 15.  that will put a stop to this nonsense.



twittering in your lingerie

holy cow, i am having a morning!  it’s just “a morning” because i have to divide the “great” from the “crappy”; this morning is both.  you know about the crappy already, no need to reiterate.  the great part is that it seems like all the humor rises to the top like beer foam when i am feeling physically bad.  i say that with the greatest of endearment, as i love beer, having grown accustomed to it as an engineering student.  engineering at vanderbilt in the 70s had a great number of gi’s, and we didn’t have wine and cheese parties-we had beer and chips.  or just beer.  a cultured bunch we were, nothing like the stereotypical nerds and techies, but problem-solvers with robust humor and easy partnerships.

away from the beer!  today the today show tackled the topic of twitter.  stephen colbert  happened to be a guest, and when asked if he used twitter, he said “yes, i’ve twatted”.   that laugh picked me up off my pillows and propelled me into the sitting position.  a bit later, ellen degeneres began her daily dance, and i slid out of bed and danced with the crowd, shrilling “woot-woot” and shaking my hips.  hips seem to shake even when all the adjacent joints are stiff and unyielding.  especially if the music is right.  that wasn’t all the fun this morning.  an enewsletter called knitter’s review comes on thursdays, and today parker linked us to a video of extreme shepherding, one in which the sheep were wearing led lights and being coaxed into amazing patterns.  you can laugh too:  http://www.youtube.com/watch?v=D2FX9rviEhw.

today i’m continuing with a beautiful coral baby sweater that i started yesterday, a custom piece that will be done saturday.  it is trimmed in seed stitch, and made from a soft, soft, lofty yarn:  25% cashmere/25% angora/50% very fine merino.  i’m a firm believer in giving babies soft clothes.  life is hard enough without confronting rough, itchy, synthetic fibers in your first few years.  the washing issues don’t concern me.  what does a baby wear that is too big to pop in the sink for a 2-minute hand wash?  if mom can hand wash her fancy lingerie (her “privates” as ellen degeneres once called them), she can pop junior’s sweater in for a quick cleansing.  truth be told, the baby is going to spend most of its days swaddled in one of your t-shirts and a diaper, and only put on the cashmere sweater for church or a photo session.  just don’t spill your communion wine on the kid and it’ll be fine. 

i’ve got stuff to do today.  gotta go twitter, tweet, and wash my feet.


the war escalates

i hit the wall today.  no caps because my fingers are stiff and sore and it takes extra reach and force to hold down the shift key.  my wrists, shoulders, elbows, ribs, hips, knees and feet also hurt.  my cheeks are red and hot to the touch.  my feet are so stiff that i have to grab for support when i first stand.  yesterday i could feel the heay artillery of the b cells really pushing me, and i increased my prednisone.  doubled the steroids, in fact, from 7.5 to 15 milligrams per day.  it’s not a big dose, but is a relatively large increase.  today started rough and stayed rough.  can’t tell the steroids have done their work. 

this makes a weird dilemma.  i can either ride this period out with increased steroids-much more than i’m taking today- for the time until my treatment next month, or i can request earlier treatment.  my rheumatologist isn’t thrilled with every four months, and probably won’t like making it sooner.  the oncologist, however, told me i should be treated when i needed it, and i think i’m the definition of “needing it” right now.  hmmmm.

i don’t want more steroids for five minutes, much less three or four weeks.  guess i’ll make the rounds and see what the docs say and if they can agree.  i hate making the rounds when i’m sick.  doctor visits are so much easier when you’re well. 

i’m temporarily putting down my other projects, including the recycled cotton fingerless mitts i started yesterday.  i’m making easy crocheted chemo caps so i will have goodies for the unit when i do go for treatment.  i hate to go to a party empty-handed. 

this evening i had dinner at a newish thai restaurant named ‘rain’.  the green curry was so lovely i wanted to take a swim in the bowl.  it had veggies which included frozen peas and carrots, and wonderful tofu that was perfectly fried.  i didn’t mind the frozen veggies.  the cute little diced carrots took me back to my childhood.  i could probably use a supply of them right now; slicing and dicing isn’t going to be easy with these hands. 

dinner was a send-off for my niece, who is moving to chicago so i have a good city to visit.  yes, it’s all about me.  actually, she is moving to solidify a relationship and enhance an incredibly well-rounded life.  i admire the versatility and foresight of people who embrace a variety of roles and trainings, and work so that one overlaps another and another and they all interact.  if it’s not too hectic and far-flung, it must be very fulfilling.  i’ve never felt that i was a unidirectional, narrowly defined person with a single, immutable focus. 

after dinner i had to pass the mall to get home, so i stopped to purchase elastic thread to use in the occasional knitted piece.  the store was closed.  i returned to my car and drove to the next craft store.  i borrowed a handicapped parking space, trudged to the door and through a million other craft areas to the back of the store.  no elastic thread.  i was frustrated by the difficulty of the task, the energy drain and pain from walks that would ordinarily have been easy. 

at home now, i lack the drive to clear off my bed.  i’ll sleep with a pile of paperwork, a knitting bag, my computer and a stuffed animal on my bed.  not that it matters.  that side of the bed has no inhabitant.  might as well make good storage space.

i’ve got good books and lots of yarn.  i think i’ll need them for the next little bit.


My Body at War

Happy to be back.  That’s me.  Back is here, writing.  I write all the time in my head, unfortunately without that electronic connection to my printer that would allow it to be printed out.  Even better would be a line directly to my laptop, so that my posts could be written straight from the brain.  In reality, a lot gets edited from the original brain posts, and that’s a good thing. 

My brain life is sometimes an extension of the life you see, one where I am able to be the before-lupus, before-trauma Essie.  It occurs to me that you probably think the two are the same.  Only those who know me very well, know all of my history, are aware that there was extreme, life-changing trauma in my life before I was diagnosed with lupus.  One could almost say that my life began again, and only slowly, with profound changes, after that time, and the diagnosis of lupus on top of that…Suffice it to say that it is sometimes desirable to visit that “before life” and free my mind from the knowledge and experience it has now.

I will say out loud that the old adage about God not giving you more than you can bear is bullsh-t.  We certainly do get stuff we can’t bear, and we bend and warp under the pressure.  Sometimes we die.  If we are lucky (and maybe there’s more to it than luck, but it often feels like pure chance), we come out of it all with some hope and the knowledge that we’ve endured, and resolve to continue to put one foot in front of the other and make a working life.

Being on the B-cell killer (yes, abrupt change of direction) has given me a different view of my disease.  The B-cell death leaves me with incredible days of waking with the feeling of physical normalcy, and that lingers in my mind after the effect of the drug is gone, makes me keep returning for those long days of IV therapy.  As a new battalion of B cells develops and begins to invade my body, my symptoms return gradually.  At first, every step of their return made me think I was flaring, but it seems that I don’t truly flare.  Flares began suddenly, waking up one morning with stiff legs and feet, using all my energy to walk to the kitchen, lasting for weeks or months in a static fashion. 

Now the B cells return in stealthy fashion, invading joints and tissues a little at a time, making me gradually lose function and increase pain.  Units of fresh B cells have started this time with my back and my feet.  Once again, pain is every step.  Again, I put on my shoes to dull the pain and relieve the stiffness, and keep walking because I don’t want to lose function or stop taking care of myself.  In my mind, I laugh at the B cells, because they don’t know I’ll be getting treatment again next month, wiping them out for another spell. 

There are side skirmishes in this war.  While the B cells make their onslaught, I put out the fires – an infection here, a drug side effect there, always something to keep me on the alert.  My body at war.  Attacked by itself.  If you are prone to guilt, lupus is a double-whammy of a disease.  How good a person can you be if your own body is attacking you?  What secrets in your past make your bone marrow produce an army of cells that rush to hurt you?  What have you done to yourself-eaten, smoked, bathed in, breathed-to produce this reaction?  Is lupus self-hate? 

Okay, so the brain is big on drama this week.  While it is doing its thing, I’m busy producing a totally new product for my store and my craft fair booth.  News at 10.


Wool, Alpaca and Cashmere, Oh My

Today I had lunch with a friend.  That sounds so ordinary, and in a way it was.  We made the date, we confirmed it this morning, we met at Olive Garden and ate and talked.  There was lots of laughter and second helpings of soup.  But this was a reunion of sorts.  We haven’t met or visited in many long months.  Yes, we live on opposite sides of town, and we’re busy, and I’m having sick times, but there’s no excuse for our absence from one another. 


Sometimes we are just lazy in our friendships, and without realizing it we are drifting further from the ones we care about.  I made a huge jump away from most of my friends with my last move.  I thought I was making it easier for complaining family members to visit; they hated the mountain drive.  In the end, there were only more complaints about the new location, and being with my closest friends was ten times harder.  In the end, some of the most geographically distant friends have worked the hardest to maintain the bond. 


Lunch today was different in another way.  I am in a flare, and I am not sitting at home.  I take pain medication when I need to, and I get out and move.  Sometimes it’s a little move, like going to take a gift to my neighbor instead of having her send a child to pick it up.  I haven’t had any increase in prednisone, but since the hips and knees haven’t stiffened, I can still move around.  That leaves just pain and fatigue as obstacles, and neither is keeping me sitting down.  It’s a very hard decision sometimes, whether to rest or move.  There’s not a strict rule that I can point to for support of either choice, so I’m relying on my mindset.  Move, move, move.


I am surrounded by finished or almost finished projects.  I finished the Noro Kureyon afghan while I was away, including crocheted edging in the tan/gray/pink Silk Garden.  I have hats and scarves that need posting.  I just made a hat this evening, South West Trading Company’s pink Gianna, with a knitted band with a big central cable, and a crocheted crown.  Fun.  Here’s some pitiful, spur-of-the-moment photography. 

I immediately reloaded my needles with aqua-colored Artesano Alpaca Inca Cloud.  It’s a beautiful dk weight soft alpaca that I have no recollection of purchasing.  It’s been on my shelf for a while, and I’ve walked by and touched it, but this is my first experience.  I’ve doubled it, put it on size 10s, and I’m making an original brim cap.  (My original pattern is here:  https://essiewb.wordpress.com/2008/04/20/original-band-hat/)   It is quick and fun, and I can get a feel for what this alpaca will do.  It’s lovely so far, with great elasticity.  The color is deeper than in the photo, quite a nice teal-ly blue.


I’ve been holding back on photos because the website was having some troubles handling visual media, but I think I can give them now.  Hang on a sec…yippee, this is the Bazic Wool hat.  It’s not blocked yet, and you can see how it has diagonal ridges that follow the purl blocks.  It’s an adorable hat.  I love the ear flaps.  I just picked up stitches on either side to knit those.  A fun anatomy fact:  your ears are closer to the middle of the back of your head than to the middle of your forehead.  You have to account for that when you make earflaps, otherwise they will not be in position to warm the ears, and they will look awkward.  I use the scientific method of trying on the hat and seeing where my ears are before I decide where to place the flaps. 


One more:  This is the black cashmere hat.  It fits loosely, the more to appreciate the softness and the unstructured crown with its tangle of cables.  I love designing this hat.  The crown began with evenly spaced cables, but they quickly took their own routes, with some crossing, others splitting or touching another and bouncing back.  Gestalt cables. 


Yes, I know, enough already.  Even if you’re a hard-core knitter, you’ve probably seen enough.  Speaking of hard-core, the knitting group I attend is going to get wild and crazy over Christmas.  We’re going to draw names and exchange inexpensive gifts.  We made some guidelines so that no one would give something really undesirable, like a canister of dehydrated dog food.  Oh yeah, break out the cider! 


Having this little short haircut sure makes it easy to give myself a scalp massage.  Ahhh, life is good.


The Habit of Angora, or Making Art with a Lupus Brain

People always tell me that I’m easy to entertain.  I’m also easy to satisfy.  This morning I got up at 5 and ate a granola bar so I could take some meds.  After the drugs took hold, I bathed, put on my big girl panties, and went to town.  By the time I walked into knitting group, my pain level had decreased and I was ready for fun. 


I had a bag of stuff to show.  Franklin Habit’s brand new book of knitting cartoons, “It Itches” just arrived, and with it a cool black knitting bag sporting one of his cartoons.  In addition, I had one of the balls of Kimono Angora that I was panting for, and one of the 20 balls of Bazic Wool.  I ordered the latter in about seven colors, knowing that I’ll enjoy using the tightly spun superwash.  My bag also held the cream-coloured Bazic Wool hat, green Karabella Supercashmere mitt (the second one isn’t done yet), and the black Debbie Bliss cashmere hat.  People helped me with hat opinions (yes, the diagonal twist in the Bazic Wool is due to the tight spin, no, don’t block the black hat). 


While we chatted I worked on the Kimono Angora scarf I cast on last night.  When I pulled that yarn from the bag, I knew I had to use it right away.  Louisa Harding Kimono Angora is soft as a feather and light as air.  It’s ball band recommends size 6 needles, but you know I knit loosely, and I’m doing just that on size 3.25 mm (size 3).  It really knits itself.  It is 70% angora, 25% wool, 5% nylon, with a twist firm enough to not split as your needles work it.  Handling this is all pleasure.  I was in love with a photo when I first discovered this yarn.  Now I’m in loove for real!  I’m not doing anything fancy with the scarf-stockinette mostly, with random purl rows.  The colour is fabulously subdued, with that angora halo.  Okay, maybe wordpress has picky taste in yarn, too.  It allowed me to upload this photo of the Kimono Angora, but not the hats I mentioned earlier.  Another day.  I do want to show the hats, because they are unique, both designs that I just made and haven’t used before. 


Some cretin in my neighborhood is discharging fireworks and making my dog crazy.  My back has done all it can do today, and I cannot bend to pick her up and put her on my bed for some calming.  Her legs are short, a definite disadvantage in this circumstance.  I speak to her as softly and calmly as I can. 


A few days ago, I saw some photos of a painting by Makoto Fujimura.  One click led to another and I ended at his blog,  Refractions (http://makotofujimura.blogspot.com/).  If you are interested in what a modern artist who practices an ancient Japanese painting technique has to say about creating and art and religion, he’s your guy.  I’m working my way through his blog, looking forward to reading his book by the same name.  If I haven’t said so before, know that I am an art freak.  I am also obsessed with process.  Anyone who can explain what he/she is doing-and how and why-has my attention.  And if you can tie it in with your purpose and world view, even better. 


Actually, that explains my fascination with medicine.  When I was a kid I wanted to know everything about human bodies.  I wanted to know how they worked, what went wrong with them, and how it went wrong, and how to fix it.  The processes were the thing, not just the descriptive words.  I had to have the processes, step by step, reaction by reaction.  I had forgotten this obsession when I saw down with my daughter to work on inorganic chemistry this week.  Working on various kinds of reactions (redox, substitution, combination, etc.) and going back to the valences and proper ratios, balancing the equations…something in my brain woke up and took notice.  It was the antidote to reading this:  “Impaired Cognitive Function Seen Early in Systemic Lupus Erythematosus”.  Basically, the article described a recently published study which documented (pretty universally) mental functional changes in newly diagnosed lupus patients.  Frankly, I think my brain is doing what is necessary.  After all, 35 year-old chemistry? 


If you’ve noticed the new emblem on the blog, it’s because I’ve been certified as a member of Healthcare Blogger.  The group encompasses a large number of medical blogs which have to maintain a certain ethical standard.  My blog has been under review for several months, and I was notified last week that we were in.  A major encouragement for me.  A cool thing, like the other side of the pillow.


My cheeks have been warm for days.  I’m revved up with this flare.  Only a few weeks until my next big IV therapy. 


Pain Management I

This is me, in pain.  The right knee is throbbing and full of fire.  The feet don’t want to touch the floor.  They scream at the slightest pressure.  The stomach is upset from pain medication.  The legs are swollen to above the knees.  The left median nerve sends electric shocks through the wrist, into the palm.  The hair is loose in its follicles, coming out easily. 


This is me, knitting.  The knitting is for distraction.  It is constant, furious, making things to cover the pain.  A scarf, a hat, another hat…the pile grows but cannot stifle the physical discomfort of this body.  Today, an afghan, a larger bandage to put on the legs and feet.


This is me, exercising.  Sitting on the bed, arms in the air.  Up-down, up-down, up-down, until the triceps ache.  Up-down, up-down, moving the muscles that can move, grateful for muscles that can move.


This is me, winding yarn.  Away from home, no swift or ball winder, the hands do the work.  Wind a large hank for long knitting. 


This is me, taking pills.  A pile of pills, one or two for everything:  the immune system, the inflammation, the pain, the fluid, the allergies, the depression, the vitamin support.  Pills to glue this body together, plug the holes, make it work.


This is me, thinking.  Thinking that this is just another day, thinking that other people have it much worse, thinking that sad thoughts can be pushed aside, thinking of the things that matter.  Thinking away the pain, breathing out the pain.