Clearing it Out and Taking it Off

It’s another cloudy morning, and I don’t mind.  I have “stuff” to do, and the weather doesn’t matter.  I have bright stuff in my mind, and the overcast sky can’t dampen that.

Yesterday, an organization that handles all sorts of issues relating to homelessness in Chattanooga sent their crew to pick up furniture that I’m donating.  It cleared my rec room of clutter and some important memories.  The blue leather sectional couch that they hauled away, still with years of wear left, was a purchase for my first home as a single parent.  It has seen dozens of slumber parties, initially Dayna’s preschool and early childhood friends, more lately young adults crashing here for fun or myriad other reasons. 

Of course, moving lots of furniture means facing the accumulated junk that has slipped underneath in five years, including a pair of prescription glasses and (not enough)  pocket change.  We’ve got some carpet cleaning to do today.

My girl is home for the summer.  Amazing how much it eases your mind to have a sick child in front of you instead of three hours away.  She’s doing great now, if you don’t count the residual allergic snot that has her carrying around a roll of tp.  She is painting.  I have always loved seeing what comes off her brush.  Maybe we’ll have new masterpieces for the new house. 

I did my bit for a national health plan this morning.  MoveOn.org (http://moveon.org) emailed me and made it easy to call my state senators and ask if they’re going to be supportive.  I called Bob Corker’s office and spoke to an aide.  I briefly told her about my own situation (retired doc, now disabled) and interest in seeing a public health care option.  She told me that Bob hasn’t released his opinion yet, but she’ll pass along my message.  It took two minutes, and I feel good now that I’ve had a chance to speak and encourage a Senator.  Click this to find your senator and a way to contact her:  http://www.senate.gov/general/contact_information/senators_cfm.cfm

I am gradually getting back in the swing of recording my intake and sticking within my points limit for Weight Watchers.  Important weigh-in tomorrow.  Every weigh-in is important.  I am tired of being obese, and I’ve gotta stay focused on translating that frustration into action.  Yesterday I got up on my sore feet and danced during some commercials.  I climbed the stairs to the second floor.  I walked in the grocery store instead of climbing into the cart.  Try, try, try…

My doctor visit confirmed that I can put osteoarthritis on my list of medical conditions.  We’re starting with orthotics in the shoes and an increase in basic meds, along with my commitment to decreasing the weight burden on those poor joints.  There’s a plan.  That always makes me feel better. 

Time for more coffee.

Peace.

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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.

Peace.

The Eyes (Don’t) Have It!!

This will be brief because I’m typing with one eye dilated and I might be missing errors that will land me in jail for slander or salaciousness or worse.  However, I could not wait to tell my news!  My eyes are fine!!!  No bleed, no retinal tear, just normal vitreous jellly breaking loose and making those little floaters, probably more than usual because of my extreme near-sightedness (near-sighted means longer eyeball and more tension on the walls where the retina attaches and the vitreous is anchored and…oh hell, my eyes are fine!).  I asked Steve if I’m coming in for silly stuff and he assured me that my concerns were justified and that I should come in for any worsening of these symptoms.  Yay, I’m not no stinkin’ eyepochondriac! 

 

That’s good news number one.  Number two is that yesterday morning I got a hankering to dive into my bedroom trash can to search for my camera, and while I felt foolish digging through the trash, I did find it!  Go figure.  It either jumped off the bed into the can or I absent-mindedly dumped it there with a load of discarded mail.  I’d like to label everything I own with some responsive material that would make it clang or beep or light up when I pushed a button, Mary, but it would sound like the cast of Stomp.  I misplace things regularly.  Usually when I’m putting them in a safe place that I will remember forever. 

 

Number three good news is that I increased my prednisone back to my 10 mg baseline, and I got up feeling good today.  I’m going to finish the baby hat I’m working on, start my load of turtles, and work on another project that has a deadline.  I don’t have to stop for cooking, I’ve got leftover tofu/cabbage/mushroom/onion sautee and simmer in my refrigerator. 

 

Oh yeah, one caution.  I mentioned the Lion Brand Recycled Cotton.  I will think twice about buying any more of it.  I am halfway through a skein and so far I’ve had about eight separate pieces of varying lengths.  They should have warned me!!!  I like how the yarn knits, and my toddler hat is adorable (I’ll show when it’s finished), but I’m gonna be weaving ends forever.

 

Someone put me in an awesome treasury last night.  I’m honored to be in that particular company – some very creative designers there.  You can see here: 

http://www.etsy.com/treasury_list_west.php?room_id=42083.  It will be up for two days. 

 

Peace.

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. 

Peace.

All Knitting, All the Time

Hehehe, I am laughing at the lie in the title.  I used that because I thought that was what I would be writing about today-knitting, only knitting.  I certainly was prepared for it!  I read Crazy Aunt Purl (www.crazyauntpurl.com) yesterday and I was all excited.  I even registered for her sweepstakes   (http://www.authorschannel.com/).  How could I resist a trip called the Book-Readin’ Wine-Drinkin’ Meet-Me-in-California Sweepstakes?!  Hope I win!!  I followed it up with 45 minutes of Knitting Daily (www.knittingdaily.com), from Interweave Press, where I marvelled over the Gallery photos of women of different sizes and shapes trying on the same handknit sweater and commentary on how to fit yourself, deciding on ease and length and details.  Kind of dovetails with one of my favorite knitting books, Big Girl Knits: 30 Big, Bold Projects Shaped for Real Women with Real Curves by Jillian Moreno and Amy R. Singer.  From both sources I love the frank discussion of our curves and which to accentuate and how to fit them in a flattering way.  I also love Moreno and Singer’s note that our yarn stores should love big girls, since when we want to make a sweater we buy LOTS of yarn.  Last year I designed and knit two sweaters for my plus-sized sister after reading that book, and they were far nicer than they would have been before I read it.  I paid attention to details such as the weight of all that yarn, picking fibers that were not as heavy but still had great warmth, since she lives in a very cold climate.  On one sweater I accentuated the waist with anterior ribbing (oops, a medical terminology slip)-that is, ribbing in the front from under the bust to high hip, creating a waist visually. 

Yesterday evening Dayna helped me finish posting the remainder of the scarves (and one belt and one wrap-jeez, I feel so compulsive about the details today) that I had photographed over the past two days.  I felt pretty good about the photographs, using my mannequin and trying to get at least three different angles and a good closeup for each product.  Since people are buying these things online and can’t see or touch them, I try to give them several good views and an accurate written description, including mentioning colours that don’t photograph true and fibers with some itchy qualities. 

I finished the night with a good bit of knitting on Dayna’s afghan.  I’ll be finished with the second strip (four more colour blocks) by tomorrow evening, and I’ll show you the progress.  I enjoy using this particular cotton yarn (Cozy Cotton).  Some cottons, especially the mercerized ones, are harsher to handle, and I’ve heard of them making blisters on the fingers as you knit with them.  I’m not a tight knitter, so I don’t usually have that problem, but I do appreciate the lanolin that is released from wool as you handle it, and the elastic nature of the wool that makes it a bit easier on my crazy lupus joints. 

Well, there it is, the lupus word.  The reason that I can’t just be all knitting, all the time, and talk to you about the pretty patterns I’m making and be done with it.  A few days ago I mentioned waking up without pain.  Now I’m at the other end of the spectrum.  This morning I woke with one of my worst symptoms:  foot pain.  When I am in a lupus flare, this is one of the first symptoms for me.  My feet feel stiff (a sign of inflammation) and they hurt all over.  Sometimes I have to talk myself into rising from a chair, because I know that it will mean instant intense pain.  Sometimes I just jump up quickly before I can consider it.  I think twice about grocery shopping and other errands that require me being on my feet, because the pain will diminish a bit while I’m walking but return with increased severity once I sit again. 

I first started to experience this pain in 1992.  My daughter was 4 years old, I had been in private practice since she was 4 months old, and over about 6 months time my level of activity had diminished.  I had stopped playing tennis and going running because my feet hurt and I tired quickly.  As a matter of fact, I cut back my exercise so much that I gained 15 or 20 pounds from my baseline of a normal weight.  My feet looked normal and I couldn’t see anything wrong with them when I examined them, so I decided to take a survey.  I thought maybe the weight gain and sore feet were related, so I began to ask every overweight woman in my practice if her feet hurt.  When you study obesity in medical school, they concentrate on the diseases caused by it, but not the physical perceptions of the obese patient, so I thought it was worth asking.  What I found (and this is by no means scientific) was that healthy overweight women with no underlying disease (like diabetes or arthritis or bunions, things that make feet hurt) didn’t have foot pain.  Hmmmm.  So that meant something must be wrong with me. 

My next step was a quest from doctor to doctor, symptoms worsening and spreading as time went on, to try and find out why I was falling apart at the ripe old age of 35.  These doctors were not strangers.  They were my friends and colleagues.  Some had known me since high school.  They were all men.  I heard multiple verses of the old “you’re just stressed” song.  I worked long, hard hours, I was mom to a little child and wife to a busy husband, and I had gained weight.  I needed to exercise, destress and not worry my little head about some aches and pains and shortness of breath and skin rashes.  I looked robust and healthy and I damn well must be. 

When the joint pains eclipsed everything else, I went to a young rheumatologist.  He thought I looked pretty normal, but he did the labwork anyway.  One week later I had to use crutches to make rounds, and I limped into his office without an appointment to beg for another look.  We dug up the labwork (done through my office for expenses’ sake) and I cried my way through an entire box of tissues when it confirmed that I had lupus.  Since then, other diagnoses have been added, but none with the impact of that first time announcement of my body’s imperfection.

Some of the things I learned from this:

  • Don’t blame symptoms on being overweight.  Find the cause.
  • When you know something is wrong, trust your instincts and keep looking.
  • Men docs really do treat women differently than women docs.  That Venus-Mars thing exists outside of love relationships.  We speak a different language, thus we have to work harder at the doctor-patient communication.  Many studies have confirmed this and today I’m too tired to dig one up.
  • It’s good to have a doctor who splurges for boxes of tissues in the exam rooms. 
  • It’s better to know what’s wrong and have a plan than to wonder.  Some of those tears were relief that I knew what was wrong and could move on to a plan for dealing with it.

So, today I am dealing with it.  I’ve got a warm bath and some knitting waiting for me.  Peace.

Two-Mood Morning

daynasblanketseconddraft-001.jpgI told you I wake up happy and optimistic.  That includes looking forward to my breakfast, which is something I never skip (and you shouldn’t either–don’t get me started!).  This morning I thought a lot about what to fix for breakfast.  Because the prednisone makes me wake up hungry, I had a banana and a cup of coffee while I was thinking, and I read my email and let the dog out and then went back to the kitchen.  I was craving protein, specifically meat, and I compromised with some Better Than Eggs microwaved with shiitake mushrooms.  No big prep-I keep packages of shiitakes in the freezer.  Waved some Mrs. Dash Tomato-Basil-Garlic over it.  It was delicious, but a total nutritional compromise.

You see, when you have an autoimmune disorder like lupus, eating recommendations are for a low-protein diet with the majority of your proteins coming from non-animal sources.  Dr. Weil explains this and gives very specific recommendations in this article:  “The Wellness Diet:  Anti-inflammatory Diet Basics and Diet Tips” at http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet.  If you search on his website you can find it in a briefer form, but I love you dearly and would like you to have the more complete information.  Ordinarily this wouldn’t be a problem for me.  At heart and in practice I am usually a vegetarian/vegan.  But my ability to comply with that is sorely compromised by the evil prednisone.  I shouldn’t say “evil” because it is a powerful anti-inflammatory agent and the cornerstone of most treatment for auto-immune, allergic, or severe inflammatory conditions.  It is a life saver, given properly.  But every treatment is a compromise, and the side effects are what you pay for that life-saving ability.

One of the most vicious side effects of prednisone is that it increases appetite.  It doesn’t just increase appetite, it causes you to feel pressured to eat.  For many people, that pressure takes the form of wanting specific foods, things they don’t necessarily eat when their dose is lower or they are off the prednisone.  It seems that most people are pushed toward high-fat foods like cheese and meat, and toward foods that are high in sugar and simple carbs like pastries and cookies.  I Googled “prednisone and eating” this morning to see what other’s experiences have been, and was propelled into the second part of my two-mood morning.

One of the huge list of references I found really caught my eye.  Midwife with a Knife   at mwwak.blogspot.com/ is the two-year blog of a young woman who is completing a fellowship (extra training in a medical specialty) in maternal and fetal medicine and also dealing with newly-diagnosed ulcerative colitis.  That particular colon disease is an inflammatory, auto-immune disorder like lupus, and the first line of therapy is controlling the disease with prednisone.  The entry that came up on Google dealt with how prednisone was affecting her eating, but the parallels to my own life and memories dredged up and feelings evoked by it all kept me reading for more than an hour. 

I have been close to tears since I began reading about her situation.  Don’t get me wrong-she details her hectic, pressured training, the trials of her own illness, the interactions with her family (good and bad) all in a very matter of fact way, with no quest for sympathy.  Her tone is generally upbeat, and there is no hint of surrender to the pressures that she is under.  Indeed, there may even be some failure to realize how far from reasonable her situation is.  When you choose a life in medicine, you are choosing to make such extreme sacrifices that somewhere in your mind you have to readjust your perceptions of what is normal and human.  There is a good bit of cognitive dissonance involved in this readjustment.  If you have an illness that is best served by decreasing stress and living a healthier lifestyle, the validity of your career decision is tested daily. 

I left a kind comment for this young obstetrician .  What I wanted to say was “Pack up your forceps and stethoscope and run like hell!!!!”  I didn’t do that.  I pulled myself out of medicine one inch at a time, going from full-time private practice alone to full-time with a partner, then part-time, then part-time in a clinic setting, then part-time in an easier specialty, finally to retiring completely.  And though I say “completely” I still treat a few friends and family, still do more than the required continuing ed every year, maintain my license and DEA registration and pay my minimal malpractice insurance fees and state professional privilege tax (damn you, Tennessee!). 

This is what the cognitive dissonance is saying:  Essie my girl, you trained so hard, and worked so long, and invested so much of yourself in medicine that even though the lifestyle clearly was detrimental to your health, you must hang onto whatever piece of it you can manage.  What crap! 

Thank God for knitting.  Thank God for the chance to have a supremely creative existence.  That includes the drawing, painting, poetry-writing, mosaicing, cross-stitching, sewing, crocheting and everything else that is so active in my life now.  Did I skip piano-playing?  and bad singing?  and the two-minute dance with Ellen every morning?  My life is a breath of fresh air.  My life is no longer killing me.

So, wiping away the tears for that young woman and hoping the best for her, I am looking at today.  As promised, I finished the first strip in Dayna’s afghan.  I have to stop calling it a blanket, as it is intended to be about 36 inches x 52 inches.  To achieve this, I am casting on 48 stitches with size 4 US (3.5 mm) needles.  I am a fairly loose knitter, and I certainly am not going to sear my fingers by trying to tightly knit a substantial size cotton, but if you are a tighter knitter you will want a slightly larger needle, probably a 5 US.   The photo that I opened with shows one end of the first completed strip of the afghan.  The whole strip has four colour blocks, rose quartz, oatmeal, rose quartz, and persimmon.   Last night I laid out the strip with the remainder of my skeins of Cozy Cotton and figured out how I wanted the other two strips arranged.  You’ll see what I chose as we continue to work on this baby. 

daynasblanketseconddraft-002.jpgThis is the other end of that strip.  Don’t you love the bright punch of colour that the persimmon brings in?  daynasblanketseconddraft-003.jpgI think you can see now in this enlargement of the oat block that it has strips of seedstitch (knit 1 purl 1 through the entire row, knitting on the purls and purling on the knits) alternating with bands of double seed stitch (also called double moss stitch).  About.com has a lovely knitting stitch glossary for detailed explanations of how to achieve many of the common stitches at http://knitting.about.com/od/stitchglossary/Learn_to_Knit_Knitting_Stitch_Pattern_Glossary.htm

and I try to be consistent about using the names that they use there when I’m refering to them.   

daynasblanketseconddraft-004.jpgThis enlargement shows one end of the blanket strip.  You can see that I’ve chosen to put a few rows of garter stitch at the end-I just like the finished look it gives the piece.  In addition, there is a garter stitch border around this block consisting of four stitches at the beginning and end of each row.  Since I cast on 48 stitches, this leaves me 40 stitches to do the pattern I’ve chosen.  For this particular block I’ve chosen to make squares in two sizes.  The larger squares are 8 stitches x 10 rows, and the smaller squares are 4 stitches x 5 rows.  Remember that a stitch is wider than it is long, so you get a truer square by making the number of rows slightly more than the number of stitches. 

Whew!  Enough!  Gotta get an order ready to mail and contemplate dropping in at Yarn Works Inc for their open house.  Knit happy, people!