Showing posts with label lupus. Show all posts
Showing posts with label lupus. Show all posts
Friday, January 2, 2015
Choosing to Love
Several months ago ("last year" I can say, now that it is 2015), I made a colossal error. I thought I loved someone I didn't know. As I came to know that individual, I knew that neither love nor friendship was possible. Having changed my Facebook status to "in a relationship" (a completely modern and bogus action), I had to eat crow. I spoke loudly and long about the incompatibilities one might find with patient inspection of the potential mate. More quietly, I felt the disappointment of dissolved feelings, and the resignation of things returning to normal. The lovely Irish singer/song writer Gilbert O'Sullivan said it, "Alone again (naturally)."
But I am one of those crazy people who has never accepted that alone is a natural state. Again and again I have ventured into the world of singles-who-desire-mates and searched for the one. Maybe even more crazy is the fact that I neither consider this a matter to be held privately or one to reveal with embarrassment or shame. Solitude can be lovely and enriching, but there should be no shame in saying long-term solitude is not for me.
Having given up the wrong-no, unsuitable is a better word-person, I proceeded to be astounded by the sudden appearance of the right one. Something in me recognized him, felt immediately that he was kindred. I embrace this growing love wholeheartedly, in the manner of one jumping off a cliff with the certainty that wings will grow before she hits the water below.
I once had a therapist who listened to months of my musings about unsuccessful love life and then pronounced that perhaps I just wasn't good at love. Ouch. The better therapist said "You don't have to work so hard at love. The good relationships will be easy." I am grateful for the second therapist and her wise words. She never doused my hopes. She left me with useful information that helps me recognize the validity of my current feelings.
I haven't felt moved to write in many months. Big things happened in 2014, and eventually I will bring them to this forum. Meanwhile, I have chosen to love.
Choosing to love takes love out of the realm of magic, and puts it in our lives in a very conscious, active way. I don't believe that love beats us into submission and rules our response to another human being. Rather, we choose every day, every interaction, to treat that partner in a loving manner. We open ourselves to sharing and transparency. We develop loyalty and commitment. And in the right circumstance, all this happens easily, without the feeling of being repressed, manipulated, or abused. Hallelujah.
This post was written without the intent of harming any human creatures.
Peace. Happy year.
Saturday, March 1, 2014
Infusion Center Fun
I'm risking a shipload of karma by talking about a funky afternoon at the infusion unit. Any talk of being in the company of cancer patients and receiving a $13,000 drug with the support of a special grant is generally made in a reverential tone. One should be grateful for life, the field of medicine, and the brick and mortar of the local teaching hospital and all its minions. Nevertheless, there are times when the bumpy, un-pretty operation of the whole process exceeds the mandate to remain gracefully silent.
I screwed up my schedule. I'm admitting that up front. The last time I went for treatment, there was a snowstorm, or what passes for one in Chattanooga, Tennessee. After a traumatic afternoon of making a 15-minute trip in two hours, complete with walking in the snow (make that slipping and sliding and falling in the snow) and dragging my disc disease-ridden lower spine up a steep hill by will alone, I lost my appointment card. Going on memory, I planned for the wrong day, and the right day had passed before I called to check and was told to come in Friday, the 28th.
The infusion center, home of cancer patients, hemophiliacs, chronic anemics, and a few auto-immune folk like me, was packed. There was no treatment recliner for me (universe forbid one take their treatment in a regular chair), so I sat on a narrow bench in the hall waiting for a free space. When I was called back and planted in a comfortable recliner, I thought my problems were over. My neighbors were a young Filipino women, sleeping under her hoodie, and and an empty chair. A nurse deftly inserted my IV and I settled in to knit and wait for my medication to be delivered from the pharmacy. The empty chair was soon occupied by a dreadfully thin, very ill-appearing man with one leg amputated. He was accompanied by an equally thin, fidgety woman who constantly asked how he felt and made frequent trips to the nurses station to request various drugs for his comfort. She never removed her sunglasses.
The Filipino girl was rudely awakened by her companion, an even younger girl (sister?) who yanked on her hood and shoved a phone in her ear. They spent much of the remaining time making calls, giggling and sharing the phone, evidently feeling that their noisiness was of no consequence if we couldn't understand their language.
In the interim, the chairs across from me came alive with an older man and woman informing each other about their lengthy illnesses and the trips they took between transfusion therapies. They were on the other side of the room, but I heard every detail about their years-long illnesses and began to contemplate pulling the curtain around my chair to pretend to solitude. Eventually the older woman finished "this mess", as she called her five times a month precious blood transfusions, and left. The man proceeded to fall asleep and snore loudly. With the first snore, the Filipino girls and I stifled laughs and looked at one another with complicity. After he cranked up to louder snores, he began to gargle, adding that liquid, bubbly component to the noise-quite an accomplished snorer he. A sudden crescendo produced audible laughing among us, prompting his wife to turn around humorlessly to find out who dared respond to her dear one's performance.
The skinny man next to me began to mutter about wanting to "puke", and I silently begged him to control that urge, as that activity is my perfect prompt for sympathetic vomiting. There was frantic activity on the part of his woman, who had by then called the doctor's office herself to ask for drugs. Her conversation with the nurses over who called when and what to expect took ten minutes. I beat a retreat to the bathroom in the hall, pushing all my hardware with me, and hoping I could stretch the walk until his problem was resolved. As I sat in the bathroom my infusion monitor beeped "complete" and I breathed a sigh of relief.
I took the slow, winding back way home, happy in my solitude, finally able to laugh over the nutty, chaotic afternoon experience.
The little guy pictured is my version of Piplup. Cuter than chemo.
Peace.
I screwed up my schedule. I'm admitting that up front. The last time I went for treatment, there was a snowstorm, or what passes for one in Chattanooga, Tennessee. After a traumatic afternoon of making a 15-minute trip in two hours, complete with walking in the snow (make that slipping and sliding and falling in the snow) and dragging my disc disease-ridden lower spine up a steep hill by will alone, I lost my appointment card. Going on memory, I planned for the wrong day, and the right day had passed before I called to check and was told to come in Friday, the 28th.
The infusion center, home of cancer patients, hemophiliacs, chronic anemics, and a few auto-immune folk like me, was packed. There was no treatment recliner for me (universe forbid one take their treatment in a regular chair), so I sat on a narrow bench in the hall waiting for a free space. When I was called back and planted in a comfortable recliner, I thought my problems were over. My neighbors were a young Filipino women, sleeping under her hoodie, and and an empty chair. A nurse deftly inserted my IV and I settled in to knit and wait for my medication to be delivered from the pharmacy. The empty chair was soon occupied by a dreadfully thin, very ill-appearing man with one leg amputated. He was accompanied by an equally thin, fidgety woman who constantly asked how he felt and made frequent trips to the nurses station to request various drugs for his comfort. She never removed her sunglasses.
The Filipino girl was rudely awakened by her companion, an even younger girl (sister?) who yanked on her hood and shoved a phone in her ear. They spent much of the remaining time making calls, giggling and sharing the phone, evidently feeling that their noisiness was of no consequence if we couldn't understand their language.
In the interim, the chairs across from me came alive with an older man and woman informing each other about their lengthy illnesses and the trips they took between transfusion therapies. They were on the other side of the room, but I heard every detail about their years-long illnesses and began to contemplate pulling the curtain around my chair to pretend to solitude. Eventually the older woman finished "this mess", as she called her five times a month precious blood transfusions, and left. The man proceeded to fall asleep and snore loudly. With the first snore, the Filipino girls and I stifled laughs and looked at one another with complicity. After he cranked up to louder snores, he began to gargle, adding that liquid, bubbly component to the noise-quite an accomplished snorer he. A sudden crescendo produced audible laughing among us, prompting his wife to turn around humorlessly to find out who dared respond to her dear one's performance.
The skinny man next to me began to mutter about wanting to "puke", and I silently begged him to control that urge, as that activity is my perfect prompt for sympathetic vomiting. There was frantic activity on the part of his woman, who had by then called the doctor's office herself to ask for drugs. Her conversation with the nurses over who called when and what to expect took ten minutes. I beat a retreat to the bathroom in the hall, pushing all my hardware with me, and hoping I could stretch the walk until his problem was resolved. As I sat in the bathroom my infusion monitor beeped "complete" and I breathed a sigh of relief.
I took the slow, winding back way home, happy in my solitude, finally able to laugh over the nutty, chaotic afternoon experience.
The little guy pictured is my version of Piplup. Cuter than chemo.
Peace.
Friday, August 9, 2013
WTF: In a Good Way
Honestly. Honestly! I could use another phrase here but so far I've managed to keep my blog free of some of my favorite exclamations, but some days really make you wanna say WTF. In a good way.
I burnt my turkey burger (and Lucy's, too), installed the wrong cartridges in my printer and washed my debit card today. Everything came out just fine.
Lucy and I had slightly smaller turkey burgers as I removed the ring of char for discard. She didn't seem to notice the difference, expressing her "this is the best day of my life" attitude as I fed her tiny bites. She's lost a bunch of teeth so she doesn't chew anything if she can help it, so it takes a long time to feed her a burger. A long, happy time.
I had a form to print, fill out and return for my daughter. When I finally realized that the printer was telling me it didn't recognize the cartridges I had installed, I jumped in the car and went to FedEx Kinko's, the small, friendly one near my house. A nice, patient employee kept an eye on me and helped me get past obstacles like how to insert my very clean debit card. An amazing young man refused to take the computer and scanner ahead of me, and I chatted with his mom a bit as I did my scan and email chores. When I finished I bought myself a little bag of m&ms because it was that kind of day. Then I bought one for the nice young man in case he was having that kind of day, too.
The ink cartridge store didn't have the black cartridge I needed, but the man who helped me knew right away what could substitute for it. I wanted to make a commercial for them.
Perhaps the craziest thing is that I've had wild energy all day and none of this made me feel like falling on the bed with exhaustion. It is more remarkable when you consider that my last bio-therapy treatment failed, and I have not replaced it with anything. I've been cruising along for several months on a few milligrams of prednisone a day, and if anything I feel better. Lupus is a capricious disease. I never know if I'm waking to a good day or a bad one, but I appreciate this recent string of good ones.
Peace.
I burnt my turkey burger (and Lucy's, too), installed the wrong cartridges in my printer and washed my debit card today. Everything came out just fine.
Lucy and I had slightly smaller turkey burgers as I removed the ring of char for discard. She didn't seem to notice the difference, expressing her "this is the best day of my life" attitude as I fed her tiny bites. She's lost a bunch of teeth so she doesn't chew anything if she can help it, so it takes a long time to feed her a burger. A long, happy time.
I had a form to print, fill out and return for my daughter. When I finally realized that the printer was telling me it didn't recognize the cartridges I had installed, I jumped in the car and went to FedEx Kinko's, the small, friendly one near my house. A nice, patient employee kept an eye on me and helped me get past obstacles like how to insert my very clean debit card. An amazing young man refused to take the computer and scanner ahead of me, and I chatted with his mom a bit as I did my scan and email chores. When I finished I bought myself a little bag of m&ms because it was that kind of day. Then I bought one for the nice young man in case he was having that kind of day, too.
The ink cartridge store didn't have the black cartridge I needed, but the man who helped me knew right away what could substitute for it. I wanted to make a commercial for them.
Perhaps the craziest thing is that I've had wild energy all day and none of this made me feel like falling on the bed with exhaustion. It is more remarkable when you consider that my last bio-therapy treatment failed, and I have not replaced it with anything. I've been cruising along for several months on a few milligrams of prednisone a day, and if anything I feel better. Lupus is a capricious disease. I never know if I'm waking to a good day or a bad one, but I appreciate this recent string of good ones.
Peace.
Saturday, July 20, 2013
Back Porch Vacation
I woke this morning feeling mellow. I poured my coffee and took it out on the back porch. There I sat, barefoot, in my long black shirt, rocking in a porch chair. I watched Lu make a circuit - up the little hill, along the back fence through the bushes, down the hill by the neighbors' fence, sniffing her way along the perimeter.
I called my baby sister. "I'm on vacation." I could hear her thinking: "Vacation? And she was too broke to make it to family reunion two weeks ago?" I explained my excursion to the porch. "Oh." She was not impressed. In my mind, however, that tiny excursion was a magical journey.
I selected this house to be my "retirement home". Moreover, I chose it to be my sanctuary. It is small, built around a central room that is my lounge, office, entertaining space and kitchen. I feel the walls of this house enclosing me, making a cocoon but in a safe, cozy way, not as a jail, not claustrophobic.
My daughter has a room here. It is in use very seldom this year-less than six weeks. But for her piles of possessions and art supplies, it could be a guest room. There is one more bedroom. In my mind, it is a room of possibilities. It contains the miscellaneous craft supplies, printer, unfinished knitting projects that I haven't yet relegated to organized, efficient storage. But it also has a bed, a desk, a usable closet-the basics of personal space for an as yet unseen visitor or even a permanent companion. The possibilities room.
Here on my couch, I am surrounded by the things that make my life livable-art, books, yarn. A full rack of knives, two crockpots, fruit on the kitchen counters, with a canister of anti-bacterial wipes. Old, broken-in furniture. Homemade curtains. Peace. Perfect peace.
Peace!
I called my baby sister. "I'm on vacation." I could hear her thinking: "Vacation? And she was too broke to make it to family reunion two weeks ago?" I explained my excursion to the porch. "Oh." She was not impressed. In my mind, however, that tiny excursion was a magical journey.
I selected this house to be my "retirement home". Moreover, I chose it to be my sanctuary. It is small, built around a central room that is my lounge, office, entertaining space and kitchen. I feel the walls of this house enclosing me, making a cocoon but in a safe, cozy way, not as a jail, not claustrophobic.
My daughter has a room here. It is in use very seldom this year-less than six weeks. But for her piles of possessions and art supplies, it could be a guest room. There is one more bedroom. In my mind, it is a room of possibilities. It contains the miscellaneous craft supplies, printer, unfinished knitting projects that I haven't yet relegated to organized, efficient storage. But it also has a bed, a desk, a usable closet-the basics of personal space for an as yet unseen visitor or even a permanent companion. The possibilities room.
Here on my couch, I am surrounded by the things that make my life livable-art, books, yarn. A full rack of knives, two crockpots, fruit on the kitchen counters, with a canister of anti-bacterial wipes. Old, broken-in furniture. Homemade curtains. Peace. Perfect peace.
Peace!
Tuesday, July 19, 2011
Better? Better!
I have to remind myself to post when I am doing well. I forget because I have less free time when I feel good, and because feeling bad makes me need to vent and share the weight. Lately I'm better. I go sometimes as long as ten days without a single pain pill. I walk faster, and there is a spring in my step. I go to the market and participate fully in set-up and packing out. I have an easier time sticking with my eating plan.
Methotrexate shots have been added to my regimen, and just as before (I was on it for several years in the past) it has provided some immediate improvement. I'm hoping that with metho and rituximab together, I can - wait for it - get off of prednisone. Won't know until about September or October, but that is the goal. Meanwhile, I already have a pretty severe Candida infection of the skin, but it is localized and seems to be responding to the anti-yeast meds. (No, not there. You get yeast infections of exposed skin when you are immunocompromised.) More immunosuppression, more infections. Goes with the territory.
My store is doing better, too. I've opened a branch in Minnesota. My sister volunteered to take some of my work to her local farmer's market, where there seems to be greater appreciation for handmade items and natural fabrics, and greater knowledge about eco-friendly products. My things are selling quite well. Here in town the Brainerd Market is attracting more patrons, and I am selling more products. Which leads me to...
...my 3D explosion. I love three dimensional design. I've been knitting giant bowls, cannisters and other vessels, and felting them. I've experimented with different edges and shapes and yarn types. I'm excited by what I've learned and the vessels I'm producing. I began with plain yarns that were not of my premium stock, but I've begun to use the more pricey yarns, too. Hand-dyed wools, especially variegated ones, make such gorgeous pieces. I've shown some above, including a before and after photo, documenting the magic of felting.
Finally, the gloves. I had a commission for a pair of gloves and a pair of mittens from a cold New Yorker. The gloves were the most difficult to design. The first pair I tried had fingers for an elf. The second design is what you see. Karabella Aurora 8 is my favorite merino worsted, and it made these gloves look beautiful, falling into its blissfully even stitches with such gorgeous definition. The customer was very happy with both pairs, making me feel it was well worth the extended time spent on design.
It's good to be living.
Peace.
Sunday, April 24, 2011
Something significant happened today: I decided to make a slipper-sock. I chose two yarns-a skinny, self-striping sock yarn (Felicity by KnitPicks) and a light worsted merino (Luxury Merino by elann.com). After one false start I got the number of stitches right to do a ribbed low ankle cuff. I added a cable on each side just for good measure. When I pulled into heel territory, I decided without much deliberation that I wanted a short-row heel and that I would make one tiny, center short row and then run my short-rows from cable to cable.
The perfect thing was that knowing the construction allowed me to pull this off without big calculations or consultations or any kind of pattern. I knit four pairs of socks two years ago, but I could hardly call myself a sock knitter, so this was a revelation. I could see the three-dimensional shape I wanted to achieve in my head, and I knew how to use the short-rows to make that cupping. This signals my arrival at a level of expertise that I have only reached before in medicine. I have lived with this knitting thing long enough that my understanding has a depth beyond the ability to follow a pattern. It's been integrated with my other knowledge of geometry and engineering, the fiber finding its place and making use of what's already in my head.
As usual, I haven't photographed the thing I'm talking about, but I do have photos of the lace scarf I mentioned last post. It now hangs with the rest of my summer scarves, ready for the Chattanooga Market to open next Sunday. I also have things that I never offered before-linen/cotton hand towels with tiny ruffled borders, organic cotton face cloths, mug cozies. I'm experimenting. We'll see how it is received.
Peace.
Wednesday, April 20, 2011
Black Women Do Knit; If I Wasn't Depressed I'd Put it in Caps
Wow, I haven't posted in a while and I forgot that I changed my format. I was excited when I saw the orange swirly background. I came because I learned something today. I was fooling around on Ravelry and found Ebony Elite Sistah Friends group - a large group of primarily African-American women knitters. Yes, we do exist! More than 600 members strong, 26 pages of members, overwhelmingly sistahs, pages of tan, brown, beige, light, bright, almost-white, ebony, near-ebony women who know the joy of craft. Hallelujah. Locations include most of the states, many in the UK, a few in the Caribbean, and at least one in Ireland. Black women knit. Amen.
I looked at every photo/icon, feeling irrationally that if a woman was brown and lived in my time and knitted, I must know her. It probably seems crazy, with all the knitters I know and have as close friends, that race is anywhere in this equation. It's just that I was afraid we were not feeling the joy of this fabulous past-time/obsession/preoccupation. I didn't want it to be some elite, separate activity like tennis or golf, with just a trickle of exposure for Black women.
I am doin' more than just talking about knitting. I'm proud of the lace scarves that I've created lately. I promise photos when they finish blocking. I'm also happy with my "little" things: mostly wash cloths and makeup remover squares knit in organic, undyed cotton. They are sweet little luxuries that make me feel pampered while also saving a lot of waste (disposable makeup pads), and I hope others will feel the same. I hated the super-thin synthetic wash cloths they sold for babies when I was a new mom, and I'm going to encourage them as baby gifts, too.
I've struggled with depression this spring. Nothing seems right-the unsettled weather, the absence of my father, the illness that kept my daughter from finishing her semester, the chaos in some of my relationships...I go from painful, stiff mornings when I wonder if I can keep this up to more active afternoons when I am giddily grateful that my meds have glued me together for one more day. I automatically work to boost my mood, but that constant striving takes lots of energy and concentration. I also try to maintain a stable schedule, which means I've got to stop rambling and go to bed. Rest is a good thing.
Peace.
I looked at every photo/icon, feeling irrationally that if a woman was brown and lived in my time and knitted, I must know her. It probably seems crazy, with all the knitters I know and have as close friends, that race is anywhere in this equation. It's just that I was afraid we were not feeling the joy of this fabulous past-time/obsession/preoccupation. I didn't want it to be some elite, separate activity like tennis or golf, with just a trickle of exposure for Black women.
I am doin' more than just talking about knitting. I'm proud of the lace scarves that I've created lately. I promise photos when they finish blocking. I'm also happy with my "little" things: mostly wash cloths and makeup remover squares knit in organic, undyed cotton. They are sweet little luxuries that make me feel pampered while also saving a lot of waste (disposable makeup pads), and I hope others will feel the same. I hated the super-thin synthetic wash cloths they sold for babies when I was a new mom, and I'm going to encourage them as baby gifts, too.
I've struggled with depression this spring. Nothing seems right-the unsettled weather, the absence of my father, the illness that kept my daughter from finishing her semester, the chaos in some of my relationships...I go from painful, stiff mornings when I wonder if I can keep this up to more active afternoons when I am giddily grateful that my meds have glued me together for one more day. I automatically work to boost my mood, but that constant striving takes lots of energy and concentration. I also try to maintain a stable schedule, which means I've got to stop rambling and go to bed. Rest is a good thing.
Peace.
Sunday, February 13, 2011
Back to School on Etsy
Last Tuesday I went to school. I turned on my computer and accessed the Etsy site, where I was directed to a seminar on improving your Etsy business. I heard Lorrie Veasey, Vanessa Bertozzi, Nancy Soriano, Noah Scalin, April Bowles and Michelle Ward, a wonderful array of speakers with impressive credentials inside and outside of Etsy. I was in school all day long, running for snacks and meds on the breaks, taking notes and participating in creative challenges.
This is an aspect of Etsy that most people don't see. When you go to http://Etsy.com, you see a beautiful opening page of premiere products, all either handmade or vintage. If you are there to shop, you put the item, store or seller you seek into the search engine, and proceed from there. But if you are an Etsy seller, one of the thousands who has an active store at the site, you can get a lot more from that front page. Under the heading of "Community" there is a wealth of information. It contains blog entries on every topic related to selling on Etsy: marketing, photography, competition, pricing, rules and regulations, successful seller biographies, pertinent law - those are the ones that immediately come to mind, and there are many more topics that are presented and updated for the use of the community. There is a virtual roadmap for anyone opening or considering an Etsy store.
People ask how I got the nerve to open my store, and how difficult was it. I got the nerve because I had shopped there and seen that sellers were people like me. They had products that they thought were desirable and wanted to put them out there with less overhead or in smaller quantities than a brick-and-mortar store would require. They wanted to work independently. They didn't necessarily have any business or sales experience. And the difficulty-well, on a scale of 1 to 10, getting the store open was a 3. I had to follow instructions, step by step, filling in the blanks as they were presented. I didn't have to know anything about building a web site or writing code or setting up a shopping cart. Moreover, the only charge was the $.20 (yes, that's 20 cents!) fee to list each item for three months, and a 3.5% fee on anything I sell.
Maintaining my shop is the biggie. Yes, I have to make new products, but I also have to come up with accurate and hopefully catchy descriptions. I have to photograph them to best advantage. I must relist my products frequently so that they show up early in the long list of things presented in a search. Each re-listing is another 20 cents, adding up to a considerable advertising budget. Periodically I read my introduction to the shop and my policies, and see if they are a good representation of what I do today. I update the photo for my shop banner as my artistic vision changes. And I am constantly developing new designs and patterns, updating my products, making them appropriate for the season and for my clientele. That means I have to constantly learn new techniques, refine my knitting and crochet skills, and understand what trends are current.
Anyway, enough with the how-to stuff. One of the creative exercises presented last Tuesday was as follows. Noah asked us to think of an object, then use the materials around us to create 10 likenesses or representations of that object in 10 minutes. My object was a ball of yarn. I scrambled around my house gathering materials and twisting them into "balls" and the photo shows what I came up with: from upper right corner, moving clockwise, it's a pair of pants, a hairdryer, a tape measure, a knit headband, dog leash, plastic bags, paper towels, decorative flowers with bendable stems, a hand-knit scarf, and in the center a bra and a cloth belt. That doesn't include the drawing of a ball of yarn that was my first piece. Yes, 12 items. And yes, I was having fun.
Peace.
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.
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.
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.
Peace.
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.
Peace.
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.
SIMPLE BULKY ROLLED-BRIM HAT
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.
Enjoy!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.
Peace.
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.
Peace.
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.
Peace.
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.
Peace.
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.
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.
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 Amazon.com, 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.
Peace.
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 Amazon.com, 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.
Peace.
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.
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.
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 elann.com 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.
Peace.
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 feel...um...okay, 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.
Peace.
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 feel...um...okay, 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.
Peace.
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?
Peace.
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?
Peace.
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