Wednesday, December 8, 2010

Good-bye Elizabeth Edwards

Elizabeth Edwards died yesterday. She was prepared, had her family and friends around her, and had made all her good-byes. I didn't know her personally but I knew her situation. She put a face on the woman who was left by her husband after a terrible diagnosis.
Of all the parts of traditional marriage vows, the "in sickness and in health" seems to me to be the touchiest. When men promise to stay under those conditions, they rarely know what they are talking about. Most haven't been caretakers, don't have that nurturing mothering instinct that women seem to have, and have not been periodically assaulted by their bodies with normal occurrences like pregnancy and menstruation.
I was a woman like Elizabeth Edwards - a professional woman who had managed a career and family, with a good income and personal health. I ran and played tennis and did sit-ups with my toddler sitting on my belly. I hiked with my baby in a Snuggly. That was my baseline when I was diagnosed with lupus at 35.
The diagnosis hit like a brick. I already knew that I was ill, because my ability to run and play tennis and even walk had been compromised and I was in pain daily. But the knowledge that I had a disease that wasn't going to go away...whole new ballgame. My dearly beloved didn't crack a book to learn about the diagnosis or what to expect, or to learn what living with chronic illness could be. That means the good and the bad were unknowns for him. I tried to put pamphlets and information in his hands, to no avail. Without a more objective guide, his perspective came from day to day changes and challenges.
Long story short, we were divorced within two years. Long sad story.
When your man leaves you before you get a chance to even adjust to the new circumstances, you are viewed with sympathy and pity, like Elizabeth Edwards in the vast public eye. She held it together and kept a wonderful dignity and calm-no public bashing of John, a wise acceptance of the fact that he would continue to be the father of her children and their caretaker after she was gone, and still a public presence that didn't give in to tragedy and hurt.
In my practice and in my life, I have seen the abandoned women often, and yet I can name only a few men in the same situation. Many, many times a man with chronic illness was accompanied by the woman in his life, who often knew more about his disease than he did. She was inevitably a positive force, helping with his care when necessary, picking up the financial slack by working harder or returning to the workforce, making a way for the children to continue a relationship with the sick parent. I do not fault these women; it is the way it should be, in my view. But the dichotomy sickens me. For someone to say "you are not the woman I married, you are weaker, less attractive, less able to give to me, less able to earn"-juvenile and sickening. And all too common. Makes me want to say "Suck it up, little boys, the world isn't your playground every day of your life. Grow a pair and hang in."
Peace. If you can.

Monday, December 6, 2010

Who Do You Talk To On A Bad Luck Day?

I was thinking about writing today, and I couldn't decide what to write about. In my mind was "Who do you tell when things are rough?" and "Look at my sweet baby heirlooms" and "Yay, my knees are so much better!", not to mention that this morning a friend got me started thinking about "Following Your Instincts", which has many ramifications for my life. I was a little distracted from my dilemma by the back and forth creeping of a huge truck, another delivery for the house that's being built two lots down from me. Suddenly BOOM. I ran to the door to see my mailbox laying on the ground and its pole (with the electrical light at the top) tilted 10 degrees to the left.

The young truck driver immediately came to my door, apologizing and calling his boss for me to talk with. We arranged repairs as I stood in the doorway in the 30 degree cold. The driver was sweet and apologetic. Still, I feel that awful "last straw" feeling.

It was not for nothing that I contemplated "Who do you tell when things are rough?" I've been worrying about money, my parents, my child, my health. It's been a time of very hard work and few victories. A few days ago I FINALLY had one of those wonderful days when I woke up and nothing was hurting, and I was hoping it might be a bit of a downhill stretch for a change. It was my first such day since before I broke my arm in July. A little hint of maybe some better health for a bit, a chance to build strength and improve my endurance.

One of my sisters caught up on my blog a couple of days ago. She remarked that she can never see my pain when she's with me, that I don't speak about it. Part of that is because I don't know who to tell. Or what it would help. My daughter tells me that she complains to me sometimes just because she needs to say it, and that she feels better after. I haven't had that person to "just say it" to for a long time.

I used to think that your romantic partner was the natural "just say it" person. I slowly learned that wasn't necessarily so. Sometimes that person doesn't understand their function as the supportive sounding board. They may feel less than useful, or bored, or galvanize into action to solve your problems for you. At worst, they may use your downloading of problems or fears against you. I once made a long-term partner a confidante (as he seemed to make me his) only to find that he was making a long catalog of my discussions to justify calling me mentally ill.

Anyway, just this moment, I am sitting on the couch with my cauliflower and brown rice, making this neat little entry to document that today is a rough day, and that I am working hard to make more good days but I could use some luck. Just a little luck. And I would do anything to have my one sure-thing person back to talk it over with. I miss you Lorri.

Friday, November 19, 2010

The Busy Season and the Bad, Bad Knees

A few minutes ago, I picked up the beret I was knitting and stitched my way about one-fourth of a round. Suddenly I realized that my cables had disappeared. I had turned over the hat and stitched on the wrong side. I took out the errant stitches and decided it was time for a break. I've been knitting furiously for days. Yesterday I finished an earflap cap in organic cotton, then immediately started a bright beret in Noro Silk Garden and Silk Garden Lite. When I finished the beret, I wanted to line up work for today, and I grabbed a ball of Kureyon and began the band for another beret.

That's the pace I've been keeping. This is my busy season and I want to have plenty of beautiful pieces on my table at the Market and in my Etsy store, as well as my custom pieces for Larues. It makes my heart swell to see a piece turn out better than I imagined, and I've vowed to only produce things that I love. Unfortunately, if I keep running my body like a machine, I'll end up with tendinitis and have to take a prolonged rest instead of this morning break.

Last night I struggled with my plans for the remainder of the season. I had hoped to sell at the Market weekly until the middle of December, but the first two weekends wore me down a good bit and pointed out the severe difficulty with my arthritic knees. I've written a good many "doctor notes" advising people to stop activities that are not good for their conditions, but I can't afford to have one for myself right now. I can only pay my bills if I add handiwork to Social Security. I'll have to keep working on opportunities to sell my work that don't involve lugging many pounds of heavy equipment, loading it in and out of my car, setting up and taking down my equipment and products and the long hours in the booth doing customer service (my favorite part of market sales).

With this disease, I find myself compromising at times. Take the knees. For more than a month I've endured the severe pain and difficulty standing and walking. I didn't want them injected with steroids because I know the effect it has on my metabolism and weight. Finally, last week I gave in and started a hefty steroid taper, taking my prednisone up to 40 mg daily and gradually bringing it down over two weeks. If I had been in town I could have gone to my rheumatologist for intraarticular injections, but I was out of town and had to settle for increasing steroids orally. My knees are better and I'm not hollering when I stand up. It makes me much better company. The compromise is in dealing with side effects. Makes me want to growl.

Today is lesson day. The two young girls that I am teaching will be over after school. It's good incentive for me to do some picking up. I can get so focused on work that my home (which is my workplace) is neglected. My Hoover could use a bit of work.

Today I'm writing about such ordinary stuff that I wonder why it should be here. My life is ordinary with the usual hassles that affect everyone. They don't go away because I have lupus or because I'm neck-deep in a new creative venture. Sometimes I'd like to daydream them away. Hah.


Sunday, November 14, 2010

Turtlefat Collection Goes Retail and I Can Write Again

The only thing that could keep me from blogging for almost two months is the need to keep a secret. Finally I can reveal what made me keep silent! Only a couple of people knew that my handknits were being considered for retail sale in a lovely Minneapolis boutique. Last week, Larues officially gave me my first order! I am thrilled beyond belief. I never thought my hats and gloves would find their way to a sweet, fashionable, modern store like Larues! My baby sister lives in Minneapolis and shops there, and she thought we'd be a good match, so she asked me to send her some samples to take in. Thanks, Dot!

Meanwhile, I had to get back into the swing of the Chattanooga Market, so I've had three days of great sales and fun there. With a limited display I can do setup and breakdown alone. I will have to endure whatever weather we have for the next few weeks, but this year the Market will have two weekends of preChristmas sales at an indoor venue! I'm going to be at Warehouse Row on the 10th and 11th of December, and again on the 17th and 18th. Hurray for working warm.

I hate to mention health right now. I am really feeling my weight. My knees hurt terribly with any walking or standing, and even sometimes when there's no weight on them. My fracture is healed by x-ray, but I still have a good bit of work to get my full motion and strength back in the right arm. I am having digestive problems and hoping it doesn't herald another episode of colitis. I've been free of it for years, and it has only occurred rarely, so I can't remember if indigestion and stomach pain preceded it before. I just remember having bloody bowel movements. I'm not anxious to have another colonoscopy but if it recurs I certainly will.

I've been looking into surgical weight loss procedures. I think I've exhausted my alternatives. I can't make my body handle the prednisone any better. I'm not making headway using a very sensible, reduced calorie diet. My exercise options have shrunk drastically. I'm ready to start seeing surgeons. (The time is now...did the Walrus say that because she had a big belly, too?)

The good good news is that I am inundated with design ideas. They are in my head multiplying all the time. I'm excited by color and texture to a ridiculous degree - a gorgeous hank of hand-dyed yarn can make me tear up. I showed some of my recent favorites. The hot pink with navy accents is Colinette Jitterbug sock yarn. The flowers are crochet. The blue/gray/tan beret is knit with Noro Silk Garden, one of my all-time favorite yarns. The combination of silk, mohair and a touch of wool always feels great to me, and I admire Noro for his perpetual production of organic yarns using innovative, ecofriendly processes. The tan scarf with the ruffled edge is organic cotton. I've had enough people tell me they don't tolerate animal fibers to convince me that it is worth making some winter hats and scarves from the bulkier, thick organic cottons like this Blue Sky undyed. The scarf pin is a hand-dyed polished wood from one of my favorite Etsy stores, South 4th. I've used a number of his beautiful pins and buttons. Just running my fingers over them is soothing.

Enough! I am running over with conversation because of my long absence. I can write more later.

Saturday, September 18, 2010

On Pain and Medication

Today discovered Dana Jennings, who blogs with great insight about his experiences with prostate cancer. I read one of his posts about pain, treating it with modern medication versus the stoic, sometimes misdirected handling of it in some ancestral communities. It brought me right to my current situation.

Two days ago I was overconfident about the recovery of my right arm. I carried something that was too heavy, and now I am paying for it. I've had two days of intense pain. I've medicated it enough to dull it and make me functional, but it underlies every thought and activity of the day. I've even put off my knitting group for a bit because I'm debating whether I can be social and not grumpy and distracted.

Pain has been an issue for me ever since lupus was diagnosed 18 years ago. In the early years (until about three years ago, I believe) I avoided pain medications. I would handle a day of pain by sitting quietly and doing some activity that took my mind off the pain. I would avoid using whatever joint or limb was hurting. I could effectively keep myself from dwelling on the pain, and everyone around me congratulated me for it. My psychiatrist said I should teach others how to do that. My rheumatologist laughed at the way a bottle of pain medicine that was written for a month would last for a year. I patted myself on the back for my extraordinary powers of self-control. After all, I had worked in methadone clinics and seen the pitiful souls who allowed themselves to become addicted to prescription pain medicine. I was not going to wind up like that.

What nobody saw, including me, was that I so severely restricted myself from using pain medications that I also limited my function and fitness. No one advised me that I should take enough medicine to get off my couch and be more active. No one related my persistent weight gain to that lack of activity and avoidance of pain. In the end, I didn't become addicted, I just became a sedentary lump.

My medical background did me a disservice. I was intent on taking medications that cured or helped my disease, and avoiding those that just provided comfort. If a medicine didn't decrease the immune response or stop inflammation or make nerve cells work better, it wasn't worthy of my use. I underestimated the importance of treating the pain that attended my condition. In the end, that wasn't good medicine. It contributed to weight gain, osteoporosis, fatigue and depression. It left me less able to care for myself and be independent. It was this that finally opened my eyes and made me more responsible about treating my whole being, and not just the disease.

These days I take my pain medicine thankfully, grateful to the researchers who developed ways to keep us functioning despite the pain, happy that I don't have to use so much energy enduring and ignoring this discomfort. My life is fuller, more productive, and I am more useful to myself and others.


Sunday, September 12, 2010

Free Hat Pattern: Rolled-Brim Bulky Hat

Holy Cow! I'm here for the third time in a week. Who died and left me Blog Queen? I don't know. Maybe I'm just discovering once again that making this download of emotions and reporting my activities more faithfully increases my sense of well-being.

Anyway, today I made a perfect hat by accident and I decided to share it. Sometimes a yarn says "Try this." I've learned not to ignore those pleas. When I sat down next to a ball of Point 5 this morning, it was begging to be a hat. Not a structured, carefully shaped hat, just a simple pull-on hat with absolutely no embellishment in the way of stitch-work, cabling or ribbing. As always, my patterns are copy-righted, so feel free to use them for personal use or gifts, but please do not reproduce the pattern or the product for sale.


Yarn: Colinette Point 5, 1 hank

Supplies: Size 10 needles for working in the round; yarn needle to weave ends

This simple hat is a one-day project. It is knit completely in stockinette stitch in the round and the beauty of the yarn is all the adornment needed. It is highly customizable. You could add a knitted bow or flower on one side, attach long braided ties over each ear, or change the rolled brim to a fitted, ribbed one. For a whimsical change, you could add tassels to the top, or knit ears and attach them. It is an easy, quick, multi-purpose hat pattern.

Finished size: 20 inches (51 cm) circumference.

Gauge: The thick and thin nature of the yarn makes gauge difficult to assess. To be more accurate, you should measure at least three times in different places on your swatch and take an average. Be sure not to miss the smaller stitches in the thinnest strands of yarn when you count. 11 stitches = 5 inches.

Cast on 42 stitches. Join to work in round.

Knit every row loosely until piece measures 7 inches long.

Decrease rounds

Round 1: *Knit 7 K2tog repeat from * to end of round.

Round 2: Knit.

Round 3: *Knit 6 K2tog repeat from * to end of round.

Round 4: Knit.

Round 5: *Knit 5 K2tog repeat from * to end of round.

Round 6: *Knit 4 K2tog repeat from * to end of round.

Round 7: *Knit 3 K2tog repeat from * to end of round.

Round 8: *Knit 1 K2tog repeat from * to end of round.

Round 9: K2tog repeat to end of round.

Cut yarn, thread through remaining stitches, pull tight to close hole. Weave ends.


Saturday, September 11, 2010

Today I Was Ugly

Today I was ugly. Not physically - I was well-groomed and matching and had a new product in my hair - but emotionally. I was irritable and once rubbed the wrong way, there was yukky resentment bubbling inside my head. A friend at knitting complained about her job, and all i could think was what a blessing it is to be able to work. She named some legitimate things that are a problem with her work; inside I said "You should be glad you can work." She complained about her schedule; "Hell, my schedule is totally dependent on what my body and this disease are doing today." She continued to complain, "Jeez, would you suck it up, you big baby." I just didn't have graciousness and light in me today. Thank goodness I was holding it in, although I think the tone of some of the thoughts I actually uttered was not the most generous.

I've been struggling. This long ordeal with having a sudden worsening in my health, and having to set a new standard for making myself deal with pain and fatigue and disability, it has just been wearing me down. Lately I ask myself every day why people do this, if there's a point, if it is worth it. So far my answers have always been "because we have to", "yes" and "yes", but will I get to a day when those answers change? It's just so damn hard, all of it. The sitting down and the standing up. The awakening and the laying down to sleep. The cooking, the fetching, the dressing, the washing. The household chores.

But the past week has brought some relief, even if it hasn't completely chased away my doubts. My arm feels stable again. I no long feel that nagging weakness and feeling that things are out of place. I am confident when I raise my arm that the muscles won't spasm and make the fracture shift and make me scream. I can reach for something without wondering how it will go, or whether I should have used my left hand. Pain is still there, but not gnawing at the bone, keeping me awake and making it impossible to sit still.

Other good things have moved me this week. My knitting is better. My hands no longer feel like they are accommodating a weak link when I hold the needles. I can knit my usual hours and end a day feeling okay, able to get up the next morning and knit again. I've especially enjoyed my baths, as I can trust myself to lie back and put my head in the water and relax. No arm spasm will interrupt and make me flail and catch my breath in fear.

I Skyped with my daughter today. You might think we do it all the time, but sometimes the missing is too intense, and neither of us can tolerate a flood of tears and the dredging up of sadness. We talked for an hour. She toured me around her apartment. She showed me classwork she has completed, fascinating now that she is creating every day in so many ways. The photo is a piece of cloth that she dyed to match a flowered shirt, an assignment for her fabric class. And she made me laugh my ass off. Falling over, bellowing, not carrying how I looked laughing. It washed out some of the ugly. Maybe most of it. I feel inspired now, to do something interesting. I'm going to experiment with some slip stitch crochet that I just read about. My evening will be fun, and hopefully I won't be wondering if this day was worth it.


Wednesday, September 8, 2010

A Day for Action

It's been ages since I woke like this - alert, moving, ready to go. I've had a series of minor setbacks with the body, plus been through a round of rituximab treatment. I felt like I was putting fingers in multiple dikes, just trying to make it to the next hour, next day...a painful way to survive. No thriving involved. But today (courtesy of lots of meds and a good night's sleep) I am good. I'm actually waiting for the post office and drug store to open so I can do the errands that I want to complete before it hits 90 degrees again.

I have so much going on in the knitting arena that I have to list it to make sure I'm pushing each project forward: one custom cape, one custom afghan, one custom baby ensemble, patterns and ideas for my book, a box of products to post to a northern boutique for consideration, a couple of local Christmas markets to apply to, and refreshing my Etsy store with new photos and products. At some time in the past this knitting thing officially crossed the line from hobby to business. Now I'm trying to make it a profitable business, and sell more wisely.

One thing the broken arm has taught me - don't rely so much on physical methods of doing business. I have not been able to return to selling at the Chattanooga Market, and I don't know if I'll be ready by the end of the season. My days of heavy lifting and tedious setups in bad weather may be over. We'll see. The arm has made progress, maybe the rest of me will move forward a bit, too.

My girl is safely off to school in Georgia, three hours away. It's a blessing. She loves the UGA art school and sends me teeny phone photos of her work. Our conversations about ideas and creating stimulate my work and make me think of new ways to do things. Seeing the way she tends to the tiniest detail on her drawing and fabric work reminds me that I can do much more embellishing with my knitted items. I even have plans for some embroidery on pieces that I'll publish in the book.

The loneliness from my daughter's absence is a lesson to be learned all over again. She was here for a year, and I forgot the void that her leaving creates. Moreover, the past two months my sweet pooch was cared for by a friend while my arm recovered enough to be the caretaker again. I have talked to the walls and the television set and mostly to myself during this time. I've had to learn again how to laugh by myself, and how to breathe out the pain and sadness and let myself be okay. Some of us are created to be social, and it is a struggle to be physically restrained from that. My body as anchor, keeping me rooted to this spot...

I have had more than enough thinking time. I have come to terms with the fact that desire and will power and hard work may not be enough to reign in my weight problems. I'm totally satisfied with the way I am managing it, trying to keep my prednisone low, moving when I can and cooking healthy meals. I must accept that when I get on my bike for 10 minutes and then have a week of inflammation in my knee, it is beyond my control. Yoga? Chair yoga is my next exploration. I so want to lose. Even 50 pounds would make it easier to get around and care for myself. I've cut some real favorites out of my pantry (peanutbutter!) and stocked up on high-fiber ingredients. The price of tofu just dropped dramatically at one of my favorite groceries, and I'm learning more ways to enjoy it. Curry is in my kitchen vocabulary, and I'm baking regularly instead of buying $7 loaves of bread. My strawberry muffins are to be envied.

Can you have a fling in your mind? An old flame has been in touch, and reminded me of the positives in our relationship, long past. For a few weeks I entertained thoughts of us together, brought to an abrupt stop by some recurrences of behavior that is intolerable for me. I didn't have to think twice about mentioning this here - one huge incongruity in our non-relationship is his refusal to learn any computer function beyond email. Oh well...

Enough supposing. This day is for action! Peace!

Thursday, August 12, 2010

Retreat, Regroup and Return

I have found a limit today. Evidently, four weeks of forced helplessness and pain is my limit. I didn't know it when I woke, but suddenly I am ready to turn off my phone, tell people to leave me alone, get rid of the extra tabs in my browser, and cry when I can't find a measuring cup. I've had it. It's so bad that I am here on my computer, typing with my arm in an uncomfortable position, making pounding noises on the keys that I haven't produced in four weeks.

I am usually a social person, happy to hear from everyone (except the people I hate, who are few) and quick to find some energy for communicating. My patience is gone. Every time my phone goes "beep beep beep beep" to indicate a new text message, I startle and then curse loudly. In my mind, there are legions of torturers out there who are trying to distract me and put me to extra effort pushing buttons and answering inane messages. The Terminix man appearing at my door and saying "good morning" is only there to force me out of my chair and across the room, letting heat into my house as he lounges in my air conditioned foyer. I have one (ONE!) chore to do on my computer and I'm angry at the friend who hasn't called with the information that I need to complete it.

In a minute I'm going to cuss someone out on the intercom, grab two beers and take the chute route from my plane. I will do the ultimate "take this life and shove it". It doesn't matter that this whole thing is my fault. I packed yarn in a space bag. I left a space bag next to the door of my bedroom. I walked across the room without looking at the floor. No wait, it goes back way further. I ignored my family history and past symptoms and chose a stressful career that would certainly make me a setup for an autoimmune disorder. I took extra prednisone so that I could keep working (and playing) longer, destroying my bones and increasing my weight. I produced a body that would almost certainly break when challenged.

Okay, you can see where this is going, right? Pretty soon I will be convinced that I produced the all the bad stuff in the world, including climate change and political conservatism. I am on a downward spiral that will leave me huddled in my recliner watching Fox News and the Lifetime network. Self-pity, anxiety and self-indulgence, you are my friends.

Fortunately the last ring of my phone occurred just after the third paragraph and a friend reminded me to "retreat, regroup and return". Just the right coaching for today. Any other advice would have been too religious or too complicated, just the things to make me angry instead of contemplative and calm. For once, I'm going to listen to outside help instead of knitting furiously until my mind is numb and my body hurts more.


Wednesday, July 28, 2010

Training and Dating and Training

"...if you make your resident look bad, she'll torture you until you beg for your mama." Dr. Bailey, surgery resident, season I Grey's Anatomy. Or maybe she'll ask you out.

No matter how much they teach housestaff about boundaries and professionalism, the sad fact remains that-during your residency days-if you don't date someone from the hospital, you have little chance of dating at all. The hallowed, horny halls of Seattle Grace Hospital on Grey's Anatomy are full of resident-attending relationships. That's a pretty sticky pairing, and I only saw one during my three years of internal medicine at Johns Hopkins Hospital. What was much more common was dating between fellow residents, residents and students, house staff and nurses, house staff and other hospital get the idea. After all, the hospital was full of reasonably educated, young, single-ish people, all conveniently under one roof.

We did occasionally make the effort to diversify our selection pool. Once in a blue moon I would go out to a club with one or two fellow residents and meet some of the local fare. We usually lied about our occupations and claimed to sell shoes at a department store, mindful that many folks had misconceptions about medical residents. Some guys automatically avoided us, expecting a superior attitude and surfeit of brainy wisdom. Others heard "doctor" and expected hefty incomes instead of the meager stipends we were paid. My forays into the real world were never productive. I would drink, dance, have fun with my girls, and go home alone.

So yes, I dated as others did. It was the early '80s, no one was on line, there was no Sunday afternoon speed dating, and the hospital was full of men. Men in hospital world were judged much like men on the outside. We evaluated looks, intelligence (yes, there was some variation-a smart monkey can memorize a good chunk of medical school curriculum), origins, and whether our call schedules matched. We considered whether this was a man that would push to spend the night but forget our name during lunch in the cafeteria or rounds on the ward. Most importantly, did he have any life going on besides the lengthy to-do list of daily patient care. None of us had time for big activities, but we could read, see a movie, talk about hobbies...

Once I developed a friendship with a student and we wound up dating for months. One thing that was perversely in his favor was his ability to understand that only a portion of our internal medicine teaching would help him in his future specialty. Once our offerings crossed that line, he politely excused himself to work on improving in his own specialty or having a healthy life. I was appalled that he didn't want to stay up all night watching a new onset diabetic receive hourly shots of insulin, but he wisely chose to get some sleep. A nice corollary to this behavior was his refusal to memorize medical trivia just to suck up to the attending physician. I've never liked a show-off.


Tuesday, July 27, 2010

Do Women of Color Knit?

Last night I slept laying down. Talk about being grateful for small things! For ten days after my fracture I slept sitting, as my arm lost its therapeutic position as soon as I reclined. Every day my legs and feet grew more swollen. It was more difficult at the hotel without my recliner. I struggled to prop enough pillows and balance against them waking every hour to readjust everything.

Oh yes, the hotel. I was bored and stir-crazy in my little house, so I returned to college town with my daughter while she finishes her last week of summer school. Alone in the hotel I have gained a new perspective on designs for my book, as well as a few more words to be said.

I grew up knitting at a time when knitting was an "old lady" hobby. Funkier new crafts were being taught-think macrame-and more portable handcrafts like crochet seemed to be favored. The back to the land movement that followed hippie life seemed far removed from me, as I worked to acquire highly technical, scientific knowledge for my career. By the turn of the century and my retirement, knitting was on the rise with new fibers and better tools and a younger following who created modern, wearable gear.

When I joined that modern knitters movement, what I didn't see was women of color. Without fail, I am overwhelmingly outnumbered in groups of knitters. I am aware of only one African-American woman who regularly appears in knitting design circles, my hero, Shirley Paden. Drawn to a career in knitting design after her high-powered business position suddenly ended, she became incredibly successful. I am trying to determine if the scarcity of minority women in knitting is personal experience or reality. I've fashioned a brief survey to help assess that. Feel free to participate or pass the link to any adult women you know. I will publish the statistics.

I always like to share what I find, if it is useful and good. Knitting has done some amazing things for my life, and if there's a population that isn't getting the exposure, I'd love to aim some teaching in that direction.


Saturday, July 24, 2010

A Broken Arm?!

this is not about the punctuation or the caps. it is all i can do to use my right hand to help type here. eight days ago i slipped in my own room and fell, producing a right proximal humerus fracture that is now in control of my life.

i tried to think how to talk about this ongoing episode. descriptions of pain are always inadequate and quickly become boring, so let's just make pain a given and move on. there are all kinds of sequelae (consequences we say in the real nonmedical world) that i would like to relate.

this fracture - my right arm, up by the shoulder, resulted from a fall. in my house, i slipped and fell. i sprained my foot at that time, so i had a getting-off-the-floor dilemma. after the paramedics came and the biggest one told me he could bear-hug me and lift me up, we tried. i screamed and we quit that trial. i scooted over to a chair while holding my arm, wrenched my good foot and bad foot into position, and stood up. you do what you have to do.

who knew a fracture made you sick? the first few days i felt feverish and tired. yesterday i went out for the first time, and i slept deeply for hours after. i have been fortunate to not dive into a lupus flare. i have been hungry, i suppose for the extra nutrition required to heal.

when you are hungry and your main hand doesn't work, it is good to have friends. my friends have come to my home with amazing, tasty, fresh cooking. lentil and oatmeal loaf, minestrone full of home grown vegetables, tiny strips of collards stir-fried with fresh okra, whole wheat biscuits and tortillas...grow some bones with that! with a little help i've stirred some pots too, making one loaf of banana bread and a corn/tofu/cornbread mix casserole.

i can knit a little and finished a baby blanket order today. that makes me happier than sunshine. i am on my way to recovery.

Monday, July 12, 2010

Patterns Plus Talk Equals Book

I am writing. Turns out this whole pattern writing/design thing just flows without any big worries. I have decided that this group of patterns should have a theme, and be published together. I think that is called a book. Since I have great difficulty just stating the facts, it will have to be put together with lots of other words, chiefly a collection of my essays (or should I say "Essies"?). This will give me an excuse for lots of talking. I think I need that right now. Whenever I am consigned to living alone, I begin to have these long dialogues in my head. Putting them down on "paper" is a good way to silence those voices and bring the conversations to some kind of natural conclusion.

My patterns for this book are going to be done in some of my favorite yarns. I've ordered a bagful of them, old favorites and favorites-to-be, and just seeing them close up brings to mind the garments and home items that I should design. These are just crying out to be knit up into gorgeous pieces. One cool thing is the affordability of this bunch of yarns. I didn't go out and shop at Wallyworld (I don't ever do that, on general and political principles). I headed for a type of yarn that typically provides lots of yardage at reasonable prices. I threw caution to the wind in my selection, going with colorways that move me rather than practical solids and neutrals. Well, occasionally I am moved by a neutral, but only if I can really feel the fiber in it and maybe smell the sheep. I do have a variety of fibers represented, including animal and plant fibers, but those hydrocarbon-eating synthetics are at a minimum.

Speaking of synthetics, I've been requested to make some baby blankets that are going to get an ungodly amount of washing. For them, I found synthetics to be my best bet. I knit the first one in Lion Brand's old reliable Homespun. The second is in progress after a search for another yarn, one easier to knit. The inevitable snagging in Homespun's boucle construction drove me crazy in a way that only a frustrated knitter would know. I enlisted my daughter's sensitive skin to help me judge other synthetics and we settled on Deborah Norville's Serenity chunky weight. It is impressive in its softness and knits very easily, even on the $2.99 bargain plastic circular needles that I purchased with it. I'm enjoying working with an acrylic, even though my brain keeps circling back to that hydrocarbon issue. I think I would consider this for my next afghan that requires lots of washing, like one for an invalid or someone immune-compromised. It would also work for chemocaps, as they sometimes go on very sensitive scalps. No I don't have an interest in the company, but it is nice to see Deborah Norville's success since she's from Dalton, GA, 30 minutes from here.

Yesterday I served as babysitter for a wonderful toddler. It was great thinking time. Watching him play reminded me of the mobility and speed of that age group, and the qualities that their clothing should have. It also made me remember trying to satisfy a two year-old's ideas about proper dressing. I'm designing some clothes that can quickly change an outfit from down-and-dirty to church-worthy. Kids need that single piece that you throw on after they have dribbled toothpaste on the shirt or picked the same plain-Jane dress for the 50th time. I think I've got it covered. Hahaha, that's a pun. Some days I am just plain smart.


Friday, June 18, 2010

Knitting with Arthritis

That title is about the mechanics of how I knit, as well as the plan to use knitting for my life with lupus. I know, with me it's never just one thing. Can't help it, that's what the brain does - leading me here and there, tying together things that I find along the way.

This week the wonderful hat anthology that Annie Modesitt put together is being released. 1000 Fabulous Knit Hats is exactly what it sounds like, with gorgeous photos of hats knitted by scores of knitters, and ten special hats that were chosen as the best original designs. The patterns for those ten are included. Eleven of my hats are included. They are scattered through the book but can be found in the Contributors index, where I found my name under "W" for Woods Bruell. I don't think Daddy understands the significance of my persistence with my maiden name - his name - but it means a lot to me. I was stunned to see a detail from one of my hats on the Introduction page. It was such a tangible proof of my involvement there. I will probably have palpitations when the books actually arrive. You can see them here on, where there is a hefty discount.

I hope the book sells a million copies. The editor, Annie Modesitt, is a legend in knitting circles. She is an innovator , teacher, designer and writer. It takes big work to share your thoughts and designs in the huge way that she has. Her combination knitting techniques have revolutionized knitting for many of us. On a personal note, I would not be pursuing this second career without it, as those innovations have made it possible for me to knit well and endure longer knitting sessions, even with my painful arthritis. Annie has recently come to understand the endurance barrier herself, as she has dealt with severe symptoms of fibromyalgia. She writes honestly in her blog about everything in her life, including her husband's ordeals with cancer, her travels, and her feelings about her own new illness. She is deserving of every success.

I don't profit from the 1000 Hats book. It's just one way of showcasing what I love. I always enjoyed tangible proof of my work. Seeing a patient make progress, getting an education certificate, signing the payroll checks in my office - I had those in medicine. Now it's the printed pattern from Cherry Tree Hill Yarns, the calls for my custom work, counting the till at the end of a good market day. A long time ago I considered a research career. At the end of my Hopkins training I accepted a fellowship at the University of California San Francisco. For all the wrong reasons ("love") I decided to come home and continue in clinical primary care medicine. The outcome was fortuitous - instead of spending countless hours in a lab, putting tubes in the throats of lab rats, I started my family and my medical practice. I was infinitely better suited for the latter. The wonder of watching my child grow up, and the day to day satisfaction of working with people in a field that required creativity and constant change was satisfying in a way that research couldn't match.

Right now I have two custom projects under way, with a third waiting in the wings. I'm having to use all that I know about knitting with arthritis in order to run this stretch. In addition to combination knitting, which allows me to form stitches without undo twisting and turning of my needles, I have placed every project on circular needles, which keeps the weight of the growing fabric resting on my lap. When I discovered that one project was a third wider than necessary, I took off the 4 inches of work and began again. I figure this saved me at least 6 hours of extra knitting, even though I had pangs over the work I lost. I am using smaller needles than necessary on one project in order to maintain the gauge I want without having to knit very tightly. Knitting looser keeps a lot of strain off my fingers. It is especially helpful when there are intricate stitches like twists, cables, and even knitting two stitches together. That little bit of extra room to maneuver makes a huge difference. I discovered that one of my twists had moved over a stitch, and (GASP) I left it there. It was only visible to the closest inspection of a discerning knitter eye, and I didn't feel the need to undo many hours of knitting to fix it. Sometimes perfection is not the perfect option. I take frequent breaks, massage my hands, stretch, and get up from my chair. Arthritis involves more than just my hands, and my knees and hips and feet need a break, too. I keep water on my side table and take frequent drinks. It's easy to neglect hydration when you get involved in a project. My sketch book is also on the table so I can transfer those random ideas quickly as they occur to me. A few days ago, I had an idea for a sock pattern. I wouldn't believe it if I hadn't put it directly into the book-I really don't do socks. Anyway, knowing that I don't miss any ideas keeps me from being anxious and tense while I'm knitting.


Thursday, June 3, 2010

Packing for College Again

I am watching my daughter edit. Fortunately, I staked my claim on the territory occupied by my computer and my butt, as she has covered the rest of my bed with piles of her clothing. While we listen to Two and a Half Men reruns and marvel that Charlie Sheen can be serving time for domestic assault and be the highest paid man in television, she is packing for summer school at UGA. She believes that she will remove some clothing from some of the piles and leave it at home. I am waiting for proof. Packing for college year four and a half basically involves lots of clothing and two television sets. Anything else can be borrowed, appropriated or picked up on a visit home.

Next to me is the pair of wild hot pink fingerless gloves that I've almost finished knitting. They are in my favorite sock yarn, Colinette Jitterbug. I think they are going to need a flower over the wrist closing. I'm getting crochet-happy, and flowers come off my hook at the drop of a hat. I've knit them to be identical, with the tab directions matching. I liked that quirky plan, one closing with the tab on top and the other with the tab underneath, and it will be enhanced when I put non-matching flowers on them.

I've been designing like crazy. My daughter inspired me. She had pushed me to make some crochet jewelry, and finally she put some drawings in front of me and said "You're making this." She even went to the craft store and purchased plastic rings and wooden balls for me to cover, and got out a pile of beads from her own crafting stash. With her designs and beading, and my crochet, we had a pile of necklaces for the Chattanooga Market last week. They seem to be a big hit.

As I said, I'm inspired by Dayna's persistence and creativity. I've been writing patterns like crazy, and some are already submitted. Others are at the re-test stage or need photos. If I'm gonna sell patterns, I might as well get on with it. In the back of my mind I have a theme for a collection of patterns. I've written myself an email to keep it from slipping away. Focus, focus, focus.

While I try to focus, my child is diving flat onto packed heavyweight zipper bags. She tries to expand and roll around and squeeze the air out, then quickly slides the zipper. She calls this making her own space bags. Her current packing technique involves lots of these "space bags", several laundry hampers, and doing a little dance when she leaves the room.

I'm doing little dances myself these days. This week I made it to 20 minutes on the exercise bike, and I've been doing it daily. I haven't had this much exercise capacity in many, many years. Prednisone at 10 mg alternating with 5 mg each morning - my doc predicts good metabolism. Hope he's a colossal prophet.

Summer is so fun. Peace.

Sunday, May 23, 2010

No Market, But Plenty Work

It is Sunday, a month into the Market season, and I am not there. Moreover, I have promised myself not to return until my health is better. I have been struggling with the physicality of it. I could continue to struggle, and beat myself up every Sunday, but I don't think there's enough profit in it. I will miss it, but not the fatigue and pain.

The truth is that I have many other ways to work right now. I've sold my first pattern and it is available here at Cherry Tree Hill Yarns Supersock Store. I've completed several other patterns that I will put up for sale in my Etsy store and on Ravelry, where I am "Tempeh". The patterns that are currently for sale include a pair of women's mitts with cuffs at the fingers (the gold and red multi-colored ones above), a pair of men's textured mitts, a baby/toddler hat, and several women's hats.

I was approached a few weeks ago by a local photographer, Tony McDaniel, to make baby hats for use at his photography sessions. I had a ball designing cute little hats, and I will do more as needed. That job is pure fun! Tony's website makes me regret that I didn't follow Dayna's growth with regular photos. He and his wife, Leah, are extremely creative in their photo shoots, and use natural home settings so that the kids are in unique surroundings.

I have a custom design opportunity that will be a top-down, red, linen/cotton poncho style jacket. I've got it ready to go in Knit Picks Cotlin, and I'll probably release that pattern when I finish the piece.

One upcoming job has sentimental roots. I've been asked to complete an afghan that was started by an elderly women whose health has since declined. It is a beautiful cabled piece and I'm looking forward to picking up the needles on that one.

All this means that while I will miss finishing the Market this spring, I can be plenty busy while I wait for my painful ribs to heal and make myself capable of a little more exertion. It's all good.


Thursday, May 6, 2010

Celebrating Mother's Day and Writing Patterns

This is the day that occurs each year when I say "Why do I live in southeast Tennessee?" It is the day when I realize that, once again, I have to become accustomed to sweating. It is the day when I notice that 90% of my wardrobe makes me too hot and I have to rush out and purchase more short-sleeved, loose, light-weight, natural fiber clothing. (I don't know where it goes from one summer to the next, but I know that when the cool clothes are gone, it's an emergency.) I flew to Catherine's (a shop for big, beautiful women like me) and came back with seven tops. That'll hold me for two days.

While the heat has been creeping up on me, I've been preoccupied with work. Funny how much I talk about "work" now that I'm officially disabled, but it's hard to call my hobby anything else when I've taken it to such extremes. I don't have to make googobs of money to feel useful. Last week I sold my first pattern to a yarn company. You can see my mitts midway down the page on the right at the Cherry Tree Hill blog. I also began an association with a photographer, Tony McDaniel, providing baby hats for his photo shoots. In addition, I took on the task of completing an afghan begun by an elderly woman who can no longer knit. None of these things will actually keep me in summer clothes, but it feels so good to be branching out and using my skills in a variety of ways.

One friend has been urging me to write a book of my patterns. It is an interesting possibility. At least I'm beginning to write patterns down, and keep track of design ideas. It requires me to be a little bit disciplined and less scatter-brained, and that's a good thing.

I'm watching Seinfeld again because I canceled all my "excess" cable due to economitis. I feel sheepish admitting that I'm enjoying it. Who needed all those extra channels? I have some new ones, like the Create channel, and I'm catching up on old sitcoms that I never knew existed. How cool is that? Hmm. How dorky am I for thinking that's cool?

I had a birthday lunch with a good friend yesterday. We had been talking about it ever since February. Cinco de Mayo is close enough, right? Maybe by the 4th of July we'll get around to celebrating her March birthday. We're on top of it. Speaking of celebrating, my girl and I will be kicking it some place fun on Mother's Day. We've had some kinda year. We double D deserve it.


Wednesday, April 28, 2010

The Way It Goes on a Bad Day

This is how it goes. Your medicines are getting low. You call in for refills. One of your medicines needs prior approval, the pharmacist informs you. They will call the doctor's office and request it. Two days later, you drive to the pharmacy. None of your refills are ready. The tech doesn't know why. Please come back later. You drive back later, and one medicine is ready. The Medicare drug plan denied approval for the other, and it costs $243 for half a month's supply. "Never mind." You take the other and go.

The drug you can't get is Lidoderm, a newish pain medicine that works well for you. You slap on a patch, the lidocaine soaks in through the skin and relieves the pain underneath for 12 hours. No addiction, no side effects, no fuss. You could take a huge dose of narcotic pain medicine and get the same relief, but it has obvious drawbacks - nausea, drowsiness, the risk of physical dependency. Unfortunately, the insurance company doesn't care. Lidoderm is expensive, generic pain pills are cheap.

You go home and get out the computer. You have to research this. How do you make an appeal to that Medicare Part D provider? Does the drug company have a patient assistance program for people who can't afford their medicine? Did your doctor say the wrong thing in trying to obtain the approval? Lots of angles to attack.

So today you have knitted and washed clothes and changed bedclothes and cleaned up the kitchen. You made salmon patties for dinner. You let the dog in and out, in and out and fed her. You bathed, cleaning the bathtub after. You did the appropriate maintenance to live in your home and care for yourself. All this with severe pain in your joints and no patches.

In addition, you have taken all your meds, watched your diet, logged your activity and exercise.

This is why people with chronic illness get depressed and discouraged. It's not just about knowing what's wrong and how to fix or manage it. It is about mind-numbing interactions with people who don't give a damn that their mistakes make your life miserable. It's about dealing with businesses that have all the power over your health and won't use their deep pockets to give decent care without it being legislated and enforced. And about trying to keep your finances together after more people who were selfish and greedy used your money to line their deep pockets and drained your resources.

Today my ears are ringing (they have been for two years), my sacroiliac joints hurt, my bath made me tired, and my brain is holding too many thoughts. I had to get my joy from my daughter, my new power tool toothbrush, knitting baby hats, and still being alive. The margin is very narrow.


Wednesday, April 21, 2010

Continuing the Afghan (Part 3 in series)

Wow! I've been absent from the blog for a month, and things have changed radically. Physically, I'm back. The rituximab helped every lupus symptom, including my energy and the sacroiliitis. I can put my feet on the floor without pain. I'm back on my stationary bike and I've lost five pounds. Onward!

Prep for the Market continues, and I've signed up for a number of sessions early in the season. I'm nervous about this Sunday's opening. I've added a few display pieces to make my setup easier, and I'm leaving a couple of things at home. Big trial. I made a short stack of baby blankets and added some baby garments.

In the midst of the Market prep I noticed that Cherry Tree Hill was looking for designs for their new yarn, Fingerpaints. It is a self-striping sock yarn, all merino, in yummy colors. I chose the Morning Glory and whipped out the Muffin Top Mitts that you see in Cheryl Potter's company newsletter here. I'm so excited to see my design in that spot! The yarn is fun to work with, and mitts are such an essential for me.

I haven't forgotten that I was to finish the afghan posting here. I finished both of the red panels, whipped out the stockinette stitch gray center, and duplicate-knitted OSU on it. The connection between the panels is created by making a row of single crochet on each connecting side, then using single crochet to stitch them together. It makes a nice raised seam that is decorative and sturdy. No worry about loosening of a sewn seam. That's it in the photo above.
News flash: I'm knitting MYSELF a sweater from Noro's Taiyo (cotton 40/silk 30/wool 15/nylon 15). It's a gorgeous colorway with greens, browns and pinks, and I'm happy to have my hands back on their incredibly beautiful, organic yarn. Something to show soon, I hope.
I'm back! That includes back to writing. Peace.

Friday, March 19, 2010

Meanwhile, Back at the Ranch...

I'm separating my lupus woes from my afghan series so I can concentrate fully on getting good pattern instructions out for the latter. I'm suffering on the former front, and I can't wait to be better. I have pain in several joints, including the metacarpal-phalangeal joints of my hands (where the fingers meet the palm). Those joints are swollen and tender and a bit reddened, looking like the rheumatoid arthritis joints that they are. My mom's hands looked like this before they took on the typical RA deformities. My knees ache and have sharp pains at unpredictable times like the lupus joints that they are. My sacroiliac joints are incredibly inflammed, so walking and standing is torture. Meds only partially suppress any of this, so I am a cranky hurting person.

I'm finally allowed to return to my rituximab therapy, and I had one IV session yesterday, to be repeated in two weeks. Oh joy. Seriously. I'm happy, just don't feel like smiling right this minute.

I've continued knitting during this flare (surprise!). I have my mind on completing custom orders and preparing for the Chattanooga Market. That means I'm knitting a wool hat and scarf, a custom afghan, and cute little summer hats at the same time. Must look a little schizophrenic from the outside. Right now I'm focused on spring/summer items for the Market, so the striped hats are a major step in that direction. They are knit in Esprit, 98.3% cotton/1.7% elastic, an easy care comfy yarn that knits well. It's identical to Cascade Fixation which gives me an expanded color range if I need it. I'd love to offer some little sleeveless pullovers for kids in the same yarn. We'll see. My colors were chosen by a kind of rigid formula of my own making. It has pushed me into some nice color combos that are new for me. I made each color combo in at least one adult and one child's size, so one can choose to match their offspring. They are simple enough that I'm willing to make more custom sizes if needed.


Continuing the Afghan (Part 2 in series)

I read last week's post about Starting an Afghan, and realized there was some vagueness to the initial instructions, so I will reiterate in more formal pattern fashion:

Materials: Approximately 15 balls of Knitpicks Shine Worsted yarn, one size 9 circular needle, at least 24 inches long, one yarn needle for finishing work. Yarn can be divided 10/5 balls between two colors, or 5/5/5 between three colors.

Finished measurements: Approximately 40 x 60 inches, measured hanging but unblocked.

Stitch pattern 1: Multiple of 8 stitches. All RS rows: *K2, P2, K 1x1 RC, P2 and repeat from * to end of row, ending with P2. All WS rows: Purl.

Cast on 72 stitches in first color. Purl one row (WS). Begin stitch pattern 1. Continue for total of 40 inches, ending on wrong side row. Cast off on right side using K2P2 pattern.

There. That's better. The photo shows the almost completed 20 x 40 inch panel. (In the last post, I measured the panel at 18 inches wide, but with continued handling it relaxed to 20 inches.) I'm very pleased with the pattern and its fancy ribbed effect. The piece drew many compliments as I finished it in the chemotherapy suite yesterday. It is incredibly soft and comfortable to the skin.

My gray yarn still isn't available, so I've cast on another 72 stitches to repeat the red panel. I will use the gray yarn to make a center panel. The gray must contain a good-sized area of stockinette stitch so that I can duplicate stitch "OSU" (for Ohio State University).
To be continued.

Sunday, March 7, 2010

Starting an Afghan

I'm on a knitting high this morning. I just finished the third of four afghans, and I am starting the fourth. I thought I would walk through this project as I do it. It will help keep me on track, and explore some of the thinking that gets me into a new piece.

In general, my afghans are 40 x 50 inches. I'm not fiendishly obsessed by the numbers, but that's about what is expected for a full size throw. As always with a custom project there are some guidelines from the client. This throw is for an Ohio State University fan, and therefore it will be red and gray. I made a striped OSU baby blanket for the same client, and she liked it, so I am using the same yarn. This keeps me in the realm of the familiar. I know how this yarn acts and approximately how much it will take. The yarn in question is Knitpicks Shine Worsted. It is 60% pima cotton, 40% modal (beechwood fiber), has a lovely sheen, good stitch definition, and is soft as a cloud. With the amount I need for an afghan, the price is right, too. I don't have to charge an arm and a leg to cover an expensive yarn choice.

There are always other factors that influence my knitting. In this case, I ordered the red yarn first because I was also using it for another project. Meanwhile, the gray sold out, and I have to wait a few weeks to order it. This makes knitting the afghan in strips not only a nice design feature, but an essential time-saving factor. I can knit all the red strips now, and add the grey once the remainder of the yarn is available.

Last week I ordered a stitch dictionary - 400 knitting stitches from Potter Craft. I have paged through it, admiring various stitches, not really studying any particular one but letting them soak in and broaden my scope from the patterns that I've used frequently in the past. The last afghan I made had a diamond/triangle pattern (see the photo of the gold and black throw) that evolved without much thought. This time, I decided to swatch. I wanted a ribbed look but something more complicated than just a flat rib like knit 5-purl 1-knit 5. Lately I've been in love with cables, but a complex cable is beyond the scope and price of this piece. (Yes, I charge for extra complexity.) I decided to rib as follows: *K2, P2, 1x1 RC (right cable), P2 and repeat from *. You can see the red strip that I've worked so far, and a close-up shot. By the way, the gauge with a size 9 needle is 16 stitches to 4 inches and 24 rows to 4 inches.

A small digression: I measured gauge using Knitpicks combined needle sizer and gauge measuring device. It has a clear strip over the ruler that magnifies your swatch, making it very easy to count stitches and rows. This is one of the handiest knitting tools I've purchased, and it was only $2.99.

It just so happens that the strip I showed you was knitted from one ball of Shine Worsted. Measuring it I get about 18.5 inches x 5.5 inches. I can use this information to check whether my supply of red yarn will be adequate. In the case of this particular piece, I can also finish out my red yarn and order enough gray to make up the difference. Knitting one color at a time is helpful that way - your strip width can always change to accommodate the yarn supply. Some might ask why my initial strip is so wide - after all, 18 inches is a big chunk of 40. I'm avoiding the "scarf phenomenon", my term for the time wasted when you are constantly turning a piece of knitting to start a new row. It's just not practical to knit a bunch of narrow strips. You want a piece wide enough to keep your rhythm going and spend more time knitting than turning.
Questions are welcome. I'll continue until this piece is finished.

Sunday, February 21, 2010

Bulldozing the Obstacles

I have always been able to see time in a very concrete way. Days stretch out before me, empty three-dimensional blocks, partially filled with activities and obligations. I can reach out my long planning arm and place an appointment into a slot and see how much of the day is obliterated. Different kinds of scheduled activities make the day lighter or darker, depending on their desirability. I can see obligations that are not firmly rooted being pushed to more distant blocks as I add in more urgent appointments. My days are balanced on a health platform that is also quite tangible - a slanting summation of physical capabilities that can make or break a day. That, too, is somewhat scheduled. I know when my treatments and medication changes will occur, and I can take full advantage of the associated energy, strength, and pain changes.

I describe this to explain why I am now in an uncomfortable position. Last week the surgeon threw me a curve ball. He wants to wait until my healing nodule shrinks as much as possible before excising it. This makes sense; small nodule means small incision means easier healing. If it becomes infected again, we will rush to remove it. In addition, a curve ball from the chemotherapy guys. No more rituximab until the whole nodule situation is resolved. So...I have a surgery appointment floating freely in my calendar matrix, and the health platform tilt has been completely changed in an unpredictable way. I don't know what happens when you only have one out of two infusions of a rituximab dose. Do enough B cells die to hold back the flares? Is there a risk of rebound flaring if the dose isn't "reinforced" by the followup?

I'm supposed to be able to travel soon, a big trip to Minnesota to visit my sister. I tend to regress with travel, so I try to be as strong as possible in anticipation of it. I also need my endurance for exercising (no weight loss without it on my pitiful metabolism), keeping up my house (no cleaning service in the budget now), finishing my current projects and stocking up for the Chattanooga Market opening in April. I've gone out on a limb scheduling things that were appropriate for my level of health over the past year, and now there may be a radical change.

So, we've dealt with the perception. What about the feelings? Well, I, this is not my forte, the feelings stuff. I have to sit still and be nonintellectual and try and decipher what my gut is saying. I am anxious. Fearful. Unsettled. But I am also curious, challenged, and a little excited. The wall of adversity is climbed in our minds moreso than with our arms and legs. I have climbed it before and I know I can now.

When I was a freshman at Vanderbilt, I had a hectic schedule. I was taking engineering and science courses with lots of projects and long labs. I was introduced to independent living and using my feet for transportation. I was continuing my instruction in classical piano, making the long trek to the Peabody campus to practice for hours daily. As I walked to the music department every day, I would say to myself "I am a bull dozer, plowing relentlessly forward." I made a running narrative of my trek, detailing my progress up and down hills, across the campus lawns, up stairs and down halls. It was entertaining but it also kept me moving. That kind of narrative serves me well at times like this, where I need to keep the excitement and not get stuck on the fear.


Wednesday, February 17, 2010

Dreary Lupus Details, or Tales from the Land of the Immunocompromised

When I began my blog 400-odd posts ago, it was my intention to relate tales from my daily life with lupus. Many other things have been discussed, but when the disease takes a turn that controls my day-to-day activities, I have to make it the headline. I'd rather be talking about the mittens I'm knitting for afghans for Afghans, or my current obsession with slouch hats, or a design in my head for a vest, or even the wild and interesting dreams I've had lately. Instead, there's this lump...

I keep a good eye on my skin, staying alert for rashes and bruises and lumps and bumps. When one is immunosupressed as I am by prednisone and rituximab, infections of the skin can come frequently and progress quickly. Anytime I see a little infected hair follicle gone wild with redness and swelling and tenderness, I take a brief course of antibiotics. Once in the past I delayed too long, and developed an infection in a closed, very painful space that had me calling my doctor out of church to lance it and put me out of my misery. I try to avoid that scenario. Last week one got by me. Midweek I noticed a painful swelling about waist-high on my back. If it had been where I could see it, or where something pressed on it, it wouldn't have gone so long. Anyway, it was maybe 1 x 1 cm and the skin over it was very red. I started antibiotics the next day when it had grown and was even redder. It took 48 hours for the antibiotic to control the swelling and redness as the infection continued to develop. It peaked at about 5 cm, exquisitely tender and squishy, indicating the pus within. It never drained. From there it shrunk every day, the redness diminished, the infected, cystic space becoming consolidated. I'm left with a 3 cm, firm nodule that must be removed, capsule and all.

Alongside all this is my scheduled rituximab treatment. I had to miss the second dose last week, as I can't take immunosupressive treatment when I have an infection. I rescheduled for this week, but I still can't go. I'm on for removal of the Big Lump Friday. I don't know what I do from here, so I've got a call in to my doc.

Okay, so the real nitty gritty. I missed knitting last week because I had a huge, fluctuant thing on my back that I was afraid would open and drain in the middle of the meeting. That is neither convenient or sexy. Or hygienic. It is stuff like this that can crop up and take control of my life. Just another piece of the lupus story.

On a much better note, grumpy post not withstanding, I received a lovely Valentine's phone call from a lovely man. Who knew?


Sunday, February 14, 2010

Gag, Puke, It's Valentine's Day

Already people (all female) are calling and texting Valentine's greetings. I hate this day. Its wholesale acceptance and commercialization makes it second to none in the humiliation of single women. If you are over the age of 5 and not recently widowed, the lack of a Valentine signifies some socially unacceptable deficit in your person. Every commercial shouts that a male of the species is going to deliver candy and flowers, and make a romantic evening out of showing you how special you are. No candy and flowers-not very special.

Single women are holding their breath today, hoping that someone (the UPS man?) will come forward and admit to a longheld, secret admiration, and present the candy and flowers. Even women who are preoccupied with their poverty, child-rearing, aging or illness feel that glimmer of anticipation, and the inevitable letdown as the day passes without acknowledgement.

Single men, on the other hand, make jokes about breaking up with nonessential girlfriends before the holiday to escape expensive gift purchases. Since they are the initiators, they don't have to sit around-circa 1960 dating-waiting for the call and the gift. Instead, they blow it off and enjoy basketball or-this year-the Olympics. No pressure, guys.

For most of us, it is nice to be appreciated by our men, current or past. You know, the ones whose children we are raising (alone), the one we feed every time he shows up on the doorstep after a year-long silence, the one we helped in chemistry lab or saved from flunking out of engineering school...oh yeah, and the ones we dated faithfully while they hid multiple other partners from us. Did I mention the liars? After all, we gave them all pieces of ourselves, and probably did much ego-stroking and complimenting and being nice when we wanted to scream.

When I was a young girl, my Daddy purchased valentines and candy for all the girls in his life-his wife (now of 65+ years) and his six daughters. We felt appreciated and loved. This was reinforced by getting all those classmate valentines, with the teacher's mandate that everyone be included. Maybe this was some sunshiney hiatus from the real world, but 35 years later I'm still hoping for some appreciation from the men. Maybe the early "you are special" thing was just a set-up for false expectations. Men really aren't much the sentimental, you were nice to me once upon a time creatures we'd love them to be.

This sounds really mean and snarky and bitter. It is intentional. I truly hate this day. I've tried to turn it into something else, like acknowledge all your friends day, but it doesn't work. Once I was married to a man who believed that the only thing a woman could do to warrant flowers was have a baby. Only Valentine's Day makes me remember that.

Oh yeah, I almost forgot to mention that the greetings I hate most are the ones that remind me that if I don't have a man, Jesus will fill my need and be my man. Seriously, I can tell you where to file that one.

No peace.