Wednesday, Still Listing

I’m still running my days by lists.  Knit, take care of store, cook, pack…those are the major items. 

 

Today I finished the last panel of the cotton blanket.  I made a row of single crochet and a row of double crochet on one panel side, then a row of single crochet and a row of trebles on the other.  I used slip stitches to join them.  This takes more yarn than I had to finish both seams.  I’ll be able to complete it when I get one more hank of Cozy Cotton.  I like this finish and it’s much stronger than just a slip-stitched seam.  Have to photograph tomorrow, before the daily thunderstorm. 

 

I ordered some cookbooks from Jessica’s Biscuit last week.  There were a couple I was dying to have, along with a freebie offer.  I am in love with The Joy of Vegan Baking, by Colleen Patrick-Goudreau.  The book contains everything you’d want to know about baking without animal products, including how to stock your pantry, what to look for in certain ingredients to make sure they are vegan, and how to reproduce all the popular baked goods from breads to cakes to tarts and bars.  I made chocolate cake tonight from the most simple, wholesome recipe.  It is delicious and moist and it rose quite high.  My other books are on African cuisine, vegetarian cooking (sort of a comprehensive text), and grains.  I’m a dedicated cookbook reader.  They have so much more to offer than just instructions, and I even enjoy the style of the instructions from some authors. 

 

The Noro Kureyon bag is almost done.  I haven’t decided on a style for the top.  I’m thinking of a special handle treatment, but that will have to marinate in my brain overnight.  I don’t want it to be mundane.  For myself, I prefer a handle long enough to go over the shoulder.  That’s easiest when you have a heavy load.  I inevitably design things with my own preferences in mind.  Guess my perspective is the only one I truly have. 

 

I’m happy for all the recent comments and attention to the blog.  It’s nice to know you’re not talking in a vacuum, like the tree that falls in the forest…

 

Peace.

Accomplishing Stuff

Missions accomplished.  I had a long list of things that needed attention today, and I made it through most of them.  My list ranged from phone calls to knitting.  I knitted another block for the niece’s blanket and mulled over the finishing details.  I think I’ll crochet between the panels.  I haven’t finished one that way before and it will add the width that I need.  There’s only one more panel to complete before I’m ready for that. 

 

Tonight, with the “work” behind me, I’m knitting on a project that I started months ago and then lost.  Somehow I forgot that I put it away in a basket in my living room.  I rediscovered it today and I’m adding some inches to the length.  It’s a Noro Kureyon tote bag that will be felted.  Right now the base measures 5 x 16 inches, and I plan to add another eight inches to the existing 16 for the length.  I turned up the base so you can see that it is a separate rectangle, knitted perpendicular to the body.  I knitted the base first, then picked up and knitted stitches around it’s perimeter.  I love how the narrow base has very wide stripes, and the wide body of the bag stretches them out to skinny stripes.  The colors are vivid and the yarn is rather rough, so it’s not my choice for something to wear.  It’s perfect for a bag.  It will last forever.  Noro is like comfort food to me.  I get comfort from handling their exquisitely blended colors.  The first two toes on my right foot made it into the photo.  Can you see them? 

 

 

I was ashamed to notice that Etsy has changed some of the features on the posting software.  It’s been a couple of months since I added anything to my store, and there have been some modifications to make it more streamlined.  It was a reminder to me that I’ve been neglecting the store (www.EssieWB.etsy.com), and I was happy to completely add five products.  I have another ten or so to add, but I’m not trying to fix my world in a day.  What I really need to aim for is having something new to post four or five times per week.  I did some updating.  Some unloved products (unloved by me, primarily) were removed from inventory and they will be donated to serve a useful purpose. 

 

This ability to act gradually sneaks in as my flares go away, until I suddenly find myself able to do chores that I’d neglected for weeks or months.  I love it.  I think I was raised to “get things done”.  My mom used to wake us on Saturday morning with a list of chores.  She would come into our room singing opera and annoying the heck out of us.  I’d wonder why I had to get up when we were free all day.  Next thing, I’d be eating breakfast and anticipating a morning of ironing and dusting and straightening my room.  I usually didn’t rush doing those tasks, because I kind of enjoyed the process.  Don’t tell anyone I said that.  It’s like the finishing work on a knitted piece – kind of peaceful and pleasing to perform. 

 

The ability to relax and enjoy the most mundane activity is really a blessing.  Some people think it makes one a boring person, but it actually makes you a person who will never be bored.  If all else fails, I can move into my head and distract myself from the task. 

 

I’ll continue with another list tomorrow.  I have donations to drop off at a church, yarn donations to mail, groceries to buy…

 

Peace.

Knitting Sample Pieces

This evening I completed the sample I’ve been knitting.  Samples are always top secret.  They are some of the most challenging knitting for me, and they have forced me to learn new techniques and attack patterns that I would not have otherwise chosen.  I’ve enjoyed being pushed out of my comfort zone, and I’ve never been disappointed by the product.  It’s also been a good way to discover some beautiful yarns, like elann.com’s Superwash Bamboo.  It is a wool/bamboo combo that is baby-soft and in gorgeous colours.  I have a sizeable stash in winterberry and praline and a gorgeous green and NO you may not share.  I am a bear about yarns that I haven’t yet used for myself.  I can be very generous with one that I’ve tested and used in a completed project, but I can’t share from the top of the stash.  Besides, if you haven’t ordered from www.elann.com, you need the experience.  I’m a steady customer. 

 

I guess I didn’t explain what a sample is.  You know that yarn companies and knitwear designers sell patterns, sometimes singly, sometimes in collections that are published in books.  One’s patterns are a copyrighted commodity, given or sold only for personal use.  Some designers use knitters to test their patterns and give feedback on accuracy and knitability.  In addition, samples are knit so that there is a finished product to advertise the pattern.  Doubtful that any of us would buy a pattern that was advertised with a title and the message:  “This pattern hasn’t been knit so there’s no photo, but I think it’s going to be a hip-length tunic with raglan sleeves and a side cable.  Probably a beauty.” 

 

Anyway, another sample done.  I’m proud of the work and I’ll point it out when it is published. 

 

Creeping toward improvement even as I drop my prednisone dose.  As it should be.

 

Peace.

Knitting Update, Sort Of

I am knitting!  I mean I went to knitting group!  I’ve missed at least three weeks, but this week I made it.  It’s one of the most fun things in my week, and I can count on it being fun every time.  Today a knitter brought Simply Knitting, a knitting mag from the UK.  I’m in love.  It contains 14 patterns (good deal for $10), has a freebie inside (a pair of straight needles this time), and has a nice sturdy construction.  Most knitting mags are deadly serious, but this one has a crossword puzzle (already worked it) and contests and stuff that’s just for fun.  I love the pattern format.  They have the pattern right with the photo, instead of stuck in the back somewhere.  There are lots of detail photos and little hints about construction.  It comes out monthly, and I’m going to be looking for it. 

 

I’m almost done with a major project, and I’m excited to return to the lace tee I was making for my daughter.  Today I saw the lace expert and asked what to do about the decreased area.  I was trying to guesstimate where the pattern would land after each decrease, and it wasn’t working.  The pattern was visibly disrupted.  Now I know two ways I can handle that and keep the pattern right.  The rest of that tee ought to be done in short order.

 

I ordered yarn for yet another project, one that has been requested.  I’ve been disappointed to see that my order wasn’t mailed for ten days.  Whenever I have a contract, I like to be swatching as soon as possible.  It will not be a hard project and I get to design it.  Since it’s for a little girl, it can be interesting and delicate and a little intricate. 

 

I’ve been looking at my yarn stash, content that I really do have enough yarn in my house for current and future plans.  I have to go back through periodically and fall in love with my supplies.  I could spend all my time knitting, but I haven’t been tending my store and that has to change.  Regular Etsy attention is going to be scheduled starting on Monday.  I don’t do well with spurts of activity, bundling all the posting and store maintenance.  It’s in the plan.  I’m happy with the plan. 

 

Peace.

Answers About Lupus Treatment

I put myself on the hot seat by divulging that I am both patient and physician.  I am not surprised that hard questions result from that.  I don’t mind moving from the exam table to the doc’s stool and answering whatever people ask, as long as it doesn’t constitute giving individual medical advice.  I cannot be a physician to anyone over the internet.  The following discussion refers to comments on the Treating Lupus: A Physician-Patient Perspective « Essiewb’s Weblog, published July 18, 2008. 

Regarding the diagnosis of lupus:  There is no organized external pressure for doctors to make fewer diagnoses of lupus.  There is always, from the time you enter medical school, pressure to make the correct diagnosis.  That means, for an honest, conscientious doc, if lupus was diagnosed without adequate criteria, or with incorrect interpretation of physical signs, continuing to seek the proper explanation for the patient’s illness.  There are more than 100 autoimmune disorders, and some closely resemble each other.  As we learn more about them, it is easier to distinguish one from another.  There are other rheumatic disorders, such as *fibromyalgia, which are not autoimmune but have symptoms similar to the autoimmune or collagen vascular disorders.   Most of us are aware that sometimes the most basic blood test for lupus can be positive, even when the disease does not exist.  That also provides a diagnostic challenge. 

From both the patient and physician standpoint, I have to ask, why would anyone resist having a more accurate diagnosis?  and, why would anyone want a diagnosis of lupus if they didn’t really have it?  I realize that uncertainty is difficult to live with, and sometimes it seems that having a bad diagnosis is better than no explanation at all, but we can’t welcome a wrong diagnosis and resent having it removed.  It serves no good purpose.

Next, regarding treatment for lupus: There are some things that are pretty much written in stone, that won’t vary from physician to physician or patient to patient.  Acute flares of a certain severity get high doses of corticosteroids like prednisone,  blood clots get anticoagulants like warfarin, and so forth.  The rest of treatment is something of an art and a judgment call for every decision. 

I have to emphasize that we are talking a LOT of decisions here:  To hospitalize or not.  Which blood pressure medicine to use, and how much.  To use anxiety medicine or not, and how much and how often.  To add another disease-modifying agent, and when, and how much, and how to monitor the drug’s effectiveness and/or side effects.  To stop other medications when the prednisone is increased or not.  To relieve the edema with a medication or to request bed rest with foot elevation and see how well the kidneys handle it.  That’s just for starters.

That doesn’t include the patient-centered decisions:  The crux of these is how well I know the patient.  Can I trust this patient with anti-anxietal medication or narcotic pain medicine.  Will starting these too early encourage the patient to neglect other personal resources for handling stress and pain.  Is this a patient who will follow a low-salt diet to help their blood pressure and edema.   Is this a patient who will contact me if there’s a medication problem or new symptom, or is this someone who only calls when there’s a complete crisis and things are out of hand.

You’ve probably noticed that your doctor uses a certain amount of triage with your problems.  Life-threatening stuff is always first:  make sure you know what you’re treating, and treat it in a way to keep your patient from dying.  Fine-tuning comes later.  Because we feel very strongly the responsibility for the life-threatening stuff, we can react very strongly when someone seems to question the use of our key weapons in the arsenal against the disease.  That can lead to some earnest preaching and nagging about taking corticosteroids and other disease-modifying drugs. 

Docs differ in style.  Our personalities and histories are an integral part of our relationship with patients.  The common denominators are a helluva lot of education and a sincere desire for you to be healthy.  That makes it hard when you compare one person’s treatment with another.  Conversation-not confrontation-can go a long way to clearing the air and getting answers with your own personal doc. 

 

Peace. 

 

*My personal feeling is that WeAreLupus.com should not be a dual site with fibro-the causes, treatments, and prognosis of these two diseases are completely different.  The fact that many people suffer from both doesn’t make them similar.  I think it encourages fibro sufferers to look at their disease in a more pessimistic fashion; the fact is, fibro is not life-threatening and lupus is.  In general, medications used for lupus have more potential long-term consequences than medications used for fibro.  These populations are not the same.

Thursday Counts

Random numbers from Thursday:

2 sister conversations

1 avocado eaten

3 cups oatmeal made

4 Indian dishes ordered because…

…3 people shared dinner

5 stores called to locate large rolling duffle

3 clerks didn’t know their merchandise

2 clerks unhelpful

2 duffles purchased

2 books my daughter is reading

30 minutes talking to best friend

2 surprises in best friend conversation

4 trips to laundry room

1 trip to craft room

0 trips outdoors

2 episodes of Murder, She Wrote watched

1 great idea about moving daughter to school

0 items packed for daughter or by daughter

1 trip upstairs (the second this month)

30 minutes recovering from trip upstairs

13 seconds peeking in attic to look for duffle

2 sweater seams completed

2 sweater seams to go

47 minutes of excitement at project finishing

1 realisation that I enjoy finishing work

12 cubbies of yarn visible from my bed

1 skein of bright green hand-dyed merino waiting for my loving attention

6 seconds fondling green merino

1 sore spot in rib attack

0 flares expected after I get out of this one

1 flutillion “peace” greetings in my history

 

Peace.

Prednisone and Optimism and a Whole Lotta Talk

I’ve been taking a break.  I didn’t plan it.  It started with the rib attack, which is still hanging on a little bit.  I had to double my prednisone, and that produced restlessness.  Instead of being able to sit nicely at my computer and type, I was reduced to knitting frantically, hour after hour, while I watched television.  This was good for my niece’s blanket, where I’m on the third strip of rectangles.  Not so good for blogging. 

 

In this state, I don’t forget about writing.  On the contrary, I write whole essays in my head while I bathe, knit, eat, and probably in the little bit of sleep that I’m getting.  For instance, I was bathing today and I thought about my sister’s new hairdo.  She has it done up all over her head in little twisties.  As it grows out, she sees a stylist who twists them more, including the new growth.  In my bath, there was this conversation:

“These are twist-es, not dreds.  They not the same, you know.” 

“And how I’m s’posed to know that?  What class I take teach me about twist-es and dreds?”

No, this conversation didn’t really take place, and if it had, it would have been in our usual impeccable English (only laughing a little, folks; I am such an intellectual snob).  But I was imagining right along, seeing us sitting together in Atlanta, intent on discussing the hair. 

 

Yesterday, I wrote a whole post in my head, explaining the why and wherefore of getting fed up with being chronically ill.  It went something like this:

I’ve been sick for 16 years.  It’s not exactly the being sick that gets me; I can deal with personal illness.  My sickness comes in distinct episodes that really mess up my body (memory, strength, endurance) and my household (bills, clutter, deferred maintenance).  After each episode, I have to work triple-hard to try and get back to where I was.  I never quite make it back to the pre-flare level, resulting in a slow decline over time.  Whatever improvement I made is wiped out by the next flare.

What I’m defining is a sure path to hopelessness.  Or so I was thinking.  At some point, I began to see myself as hopeless and to see my efforts as useless.  I was living with acceptance of that verdict, which I had given to myself.  And…living with that reality, a conclusion in a situation that was still evolving, made me accept resignation as my position. 

I’m of the “change your mind, change your life” belief.  Now that I realize that I chose resignation, I’ve moved 180 degrees in my mind.  I can already see the difference.  I’m not “doing” anything but changing the mindset.  I know change will follow.

Now, here’s the amazing part.  I went for chemo recently, my fabulous B cell-killing treatment.  The doctor told me that from here on, we will schedule the treatments closer together, so that we will keep my B-cells from coming back enough to produce flares.  Imagine!!!  Lupus without flares.  An opportunity to stay well, to improve and have a course that is steadily better instead of the Sisyphus life I’ve been living.  Ironic that I had changed my mind before I even realized this was an option.  I had not even asked the question.  Hello, it takes optimism to ask positive questions.  When I was being resigned, I expected to hear negative answers, so I didn’t think to ask. 

Whew.  I think too much when my dose goes up.  This was actually about a two-hour process, writing the post in my head.  I left out a few words.  I could elaborate ad infinitum.  I won’t let me be that mean. 

 

I did something fun this week.  I committed to something in advance.  The Children’s International Summer Villages is at the end of their village in Chattanooga, and they needed volunteers to provide vegetarian meals.  Three days ago, I signed on to bring a meal without worrying about how I was feeling or how the cooking would get done.  I knew we’d do it.  It was a family task.  Dayna suggested the main dish and washed dishes.  Chris prepared the vinaigrette from his own recipe and delivered the food.  I made the eggplant and broccoli pasta salad and baked a blueberry bread.  Of course there was enough for the family.  One thing the prednisone doesn’t give me a problem with is eating. 

 

Peace.