Monday, November 7, 2011

November 2011 - and I thought August was for change!

The biggest change in my life in many years has occurred. I have a partner. He is the right man at the right time and place. As Detective Monk would say, "He's the guy." He's been around a few months and I'm happy with the path my life has taken. That's it. Nothing else to say on that topic. All further rejoicing will be done quietly.

Meanwhile, lupus has laid it's little finger on my summer and fall. I was ripe for treatment in August, but had to have the second round delayed for infection. I'm sure now that this produces a less-than-optimal result. The months following these disrupted treatments don't have that crisp, healthy feeling. They are more likely to be dotted with occasional short flares and problems. Nonetheless I was able to stay off prednisone for more than two months, a real record for the past 19 years! It only resumed five days ago when I burst into a big flare. I hope this will be gone quickly and only require a short prednisone taper.

This hasn't interfered with my enjoyment of the summer and early fall. I've seen lots of gorgeous foliage in Tennessee and Georgia. It's my favorite time of year, and the crisp coolness pulls me out to make short walks in parks and explore new places. Every summer I question my decision to settle in the south. Every fall reminds me why.

I knitted like crazy to produce samples for the Minnesota boutique I associated with last winter. They have selected a nice number of pieces, easing my anxiety about being totally inadequate as a designer, and letting me breathe again. The holiday shopping season starts immediately, and I want to start setting up at Market in two weeks. I will have help, but I need this flare to get out of the way. In addition to my usual hats, scarves, cowls and fingerless gloves I have been playing with hoods.

The photos above are of a blue hood (and details of the cables), a Noro hat which features stone buttons, and a Colinette Point 5 mitten set which also has stone buttons. I am nuts for little adornments from natural materials. I'm searching for more suitable wooden ones and other types of stone, and maybe sea glass.

I'm ready to continue my 2 cents worth here. There shouldn't be another three months to wait for a post.


Sunday, August 14, 2011

August 2011 - Change Time

Wow! Lots of changes this year. Some are good, some not so much, but we've reached a point in the year when all are evident. My daughter is transferring to a different university to finish her art degree. It is a friendly environment, a little easier to reach by car, and it has the area of concentration that she desires. It took a move from old university apartment to home, then big sorting and editing of possessions, then a move from home to new university house. Can you hear my joints creaking? Actually, my girl is strong and energetic. She carried 75 percent of her things, probably 98% of the upstairs moving, and I concentrated on sorting and putting away belongings. Now that the chores are done, I can reflect on my comfort with her recent choices. She picked a school and program that seem suit all her needs, and she's already making friends there.

Both of my parents are gone. Mama followed Daddy by just four months. We knew that after 70 years she was searching for her connection with him, but her death was still a shock. I feel unmoored. There's no one to call to report my car troubles or my latest encounter with one of their church members. When I made butter cream frosting for the first time, I almost picked up the phone to discuss the results with Mama. At least once a week I wonder why Daddy hasn't called to check in: "Hey, Esoo, how are you getting along? Haven't heard from you since last week."

One of my sisters and her hubby will arrive in town soon, buying the parents' house and making Chattanooga their retirement place. With four sisters here, that will strengthen the family hub. I've always liked living in the place where relatives are most likely to visit.

I have custom orders lined up: a large blanket made of a variety of Lorna's Laces yarns, a shawl in a complicated rainbow of colors. Just finished a matching hat and booties to go with an organic cotton baby blanket. A baby boy in New York will have a bright welcome. If I can figure out how, I will add the photo my daughter took with her phone.

All is well. This is a chemo (rituximab) week, so I will put my feet up and knit.

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... 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.


Tuesday, June 14, 2011

Matlock Makes Me Laugh

Defendant's wife has an explanation for her affair that is laden with therapy-speak. Matlock says he understands: "You were hot for each other." Andy Griffith has been one of my heroes for decades. He always played characters that had good common sense and seemed much less intelligent than they actually were. His characters seemed to accept that people did strange and sometimes humorous things, and he was not too sophisticated to exclaim at them. Even as Matlock he sometimes pulls out his guitar and gives us a great song.

I am often watching Matlock this time of morning, turning from the Today Show as soon as Kathy Lee Griffin opens her mouth. This morning I need it more than ever, as I have been obsessing about my Turtlefat/Turtletots sales. I mean lack of sales. In five market or craft fair sales since the season started, I have barely covered expenses. I've been looking at my products and my displays and the economy and the things people are buying and how other vendors are doing, and on and on and on.

This is the first season that I have pushed so far into hot weather. I am discovering that people admire my scarves but it is too hot to try them on, yet I've sold one linen/cotton wrap. I've sold a few baby items (booties, hats). I've sold a few household items (cup cozies, organic cotton washcloths, grocery bags). People express interest in the fibers that I choose, chat about the soy, bamboo, corn, organic cotton, like the way children's clothing especially is done with less toxic choices, but they don't buy.

I'm doing better at labeling the items in my store so that people can recognize them from a greater distance and see the variety of items. I'm considering whether I should group them and only sell one class of item each time (baby things this week, household next week, etc.). I recently decreased some prices and made sure that every item had a fresh tag that was clearly labeled. I culled items that had been around for a while, and things that no longer conform to my aesthetic.

Yesterday I began exploring some fun creatures I call Shrunken Heads. Maybe what's fun for me will be fun for others. Maybe this will keep my mind off the constant worry about the stores.


Thursday, June 2, 2011

Preparing to Have a Flare

I've had a backache for a few days. I've set up for the Chattanooga Market twice this month, and gone to a smaller farmer's market once. I figured the pain was from hauling stuff and bending, sitting in an uncomfortable chair, etc. This morning I woke myself up singing the pain song. What I mean is that I was whimpering in my sleep because my body hurt, and the noise woke me. I could see right away that I was in trouble. I got up and began walking and my thighs were stiff. It felt like I was expending major energy to make my legs move. There were annoying little shooting pains in my lower legs even when I sat. This is a flare until proven otherwise.

Obviously I can't prepare for something that begins so precipitously, but I've got some moves for when I recognize the inevitability of the flare. First, I put in a call to my rheumatologist. It's Thursday and I don't want to get caught out on the weekend trying to reach someone. Might as well get some instructions now. Second, I look at my schedule. For the next few weeks I need to determine what is absolutely essential, and cancel everything else. I will need the extra rest and I'm probably going to lack the energy or good will to do more. Third, I rally my moral support. Telling one or two sisters, my daughter, and a few good friends alerts everyone that I may need a bit of help, if only an ear for my complaining. It also lets them know that I'm not turning down activities with them because I've suddenly developed an aversion to their company. Fourth, I start recording my food intake. If I'm going on a higher dose of prednisone it is going to drastically increase my appetite. I need to monitor what I eat and make sure I stay on program. It will be especially difficult with the low carbohydrate plan my new internist wants me to try, as prednisone makes me crave baked goods and other carbs in a remarkable way.
Since my usual day is built around my crafting, specifically knitting and crochet, I don't have to change my basic purpose. I still want to get up in the morning, see what I can learn (reading or on the Internet), do maintenance on my stores, and then work on projects. The flare will put a kink in my ability and energy for photography, so I try and do it in short sessions at the times when my energy is best.
I sat down to record this plan so that I would stop obsessing with what this flare might mean. Yes, it might be a three-month disaster, but it also might respond to steroids right away and be a non-issue in three weeks. Yes, it is going to bring more pain, but my pain tolerance is high and my distraction skills have stood me well. Yes, there's going to be some disappointment in having to give up some activities and adjust my thinking to active illness mode, but that's happened dozens-hell, in 20 years, maybe hundreds-of times and it eventually passes.
Damn. My wrists hurt.

Friday, May 13, 2011

Preparing to Go to Market

Top photo is box of labels and a set of baby headbands that I've just labeled. I have to be careful to label adult and home items with and child/baby items with
Second and third photos show scarves hanging on the new clothing rack. I hope this will show them off and allow shoppers to easily access them. I love people to touch my products and try them on.

Fourth photo shows the ends of the spiral scarf, loose yarn ready to be sewn into place.

I've been going to market events to sell my products for several years. Each time there's a process I go through to prepare. Because I am always knitting and crocheting I usually have a pile of new products that need to be labelled before I can pack them. I have printed tags on which I write the price, fiber content and care instructions. These are tied to each product with a length of yarn. I've learned that most people like tags. Some are too shy to ask, some check out tags to decide if they can afford to shop with you. Others, however, never glance at a tag, asking me for the price of each thing they examine. Go figure.

Next, I go through the products already in my rolling dufflebag and remove any that are out of season or that I don't want to display at the coming market. I replace these with the pile of new things. During this process I am also checking the condition of the items to see if anything needs refolding or a pass with the iron. If there are prices that need adjusting, I put on new tags. The few items that don't fit in my duffle (like felted rugs) are fetched and laid out with the bag so I don't forget them. I never feel compelled to take everything with me. I always have way more stuff than I have space to handle, and I'm constantly looking for ways to display them better. I'm toying with the idea of only taking one class of products at a time (housewares day, baby items only, etc.), but folks who are familiar with my store come up looking for their favorites when I finally show up to market. It's difficult when I don't have hats that day, or they've come for a newborn gift and I don't have them.

Getting my car ready is as important as preparing the products. My car is a large sedan with a decent-size trunk, but it wasn't made for hauling equipment. I must clear the way to put in a folding garment rack (new for this year!), two long folding tables, two portable chairs, a dolly, and totes filled with wrapping materials, a couple of knitting projects to work on during the market day, a money container, some snacks, my Turtlefat Collection sign, and extras like duct tape and a screwdriver and scissors, just for good measure. Oh yeah. I have to pack my tent-unwieldy and heavy, but with wheels on one end, thank goodness.

Many of the things that I take (and leave at home) are the result of many sessions at market, the trial and error of having too much of this or none of that, learning what makes it easier, what makes me function better during those long hours with my limited endurance and tendency toward swelling and pain.

Obviously, after I empty the car, I have to load all my gear. Sigh. On the other end I will have to unload it in the parking lot and haul it into the pavilion. Sometimes that affects the order of packing, other times I just go for random placement and hope for the best. We used to be able to drive into the pavilion and unload at our booth site, but that's no longer allowed.

There's always something waiting to be finished that I want to complete and take to the market. Today it was a spiral scarf that needed about 30 rows and then finishing work in order to be ready. It doesn't need blocking, so I knew it was a realistic goal. When I began this scarf I hated the short rows and turning it every few stitches. To avoid all the turning I taught myself to knit backwards. I hold my yarn in my left hand and knit continental (forward, that is), so I just leave the yarn in my left hand and throw it around the needle when I'm knitting backwards. Anyway, I finished the spiral scarf and showed it above, needle ready for weaving ends.

I haven't mentioned that I am excited the whole week before market. No matter how tiring, the preparation boosts my anticipation. Can't wait for Sunday's Strawberry Fest at the Chattanooga Market!


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 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.


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.


Thursday, March 17, 2011

Curiosity and Knitting Innovation

Two weeks ago Jumbleberryjam asked if my survey on the knitting experiences of black women had yielded results. The answer is "yes", but nothing usable. Unfortunately, it wasn't circulated to enough women to get out of the circle of women whom I know are knitters or crafters, whose contacts would more likely be knitters. I have tried to pursue the question on Ravelry (an on-line community for knitters and crocheters which is wildly popular). I did so by searching for groups that would-by name/subject of interest-suggest predominantly minority involvement. Most of them I confirmed by examining more closely individual member names and icons. It appeared that more of those groups were crocheters than knitters.

You might wonder why this question makes any difference to me at all. Well, some of it is curiosity. I just like to know who's doing what and why. Some of that curiosity can be easily satisfied by publicly available statistics; that wasn't the case with knitter demographics. The other reason I am interested is that I have enormous fun with my knitting. It also relaxes me, helps discipline my mind, and produces beautiful items for personal use and for sale. I want to share this with people and encourage others who may not have found their crafting niche to try it.

Aside from the above noted research, there are several things in my personal experience that lead me to think black women are underrepresented among U.S. knitters. First, when I am out at the market knitting and selling my stuff, people often stop to comment on their own experiences with knitting (their personal knitting or that of family members). These people are never African-American. Second, among my own acquaintances I only know a few black knitters, while I know many black crocheters. Third, only rarely has a black woman asked about joining the group of knitters that are my weekly companions knitting in a very public place. This experience has been echoed by some of the other black women I know who knit.

Lately I have been obsessed with nontraditional designs for scarves. I want to show a few of them and describe how they came into being. The top scarf was knit with self-striping yarn, a Noro that is primarily silk and cotton. I wanted to create some three-dimensional pieces extending from random parts of the scarf. To do so, I knit down a row to the spot I wanted to use, cast on 15-30 stitches to my right-hand needle, then used both needles to cast off those same stitches. That produced a two-row, coiling piece that could be pushed to the front or back of the piece before I continued to knit and complete the row. On the second photo you can see the triangular holes. I knit the posts in between the holes without a real plan, just knowing that I had to either start wide and decrease to a point or start with one stitch and increase gradually. I tried to keep the same number of rows in each triangle so the segment wouldn't make the scarf crooked. I cast on stitches in between their ends, picked up the end stitches of each triangle at the appropriate spot, and eventually had a new row to proceed from. This scarf has a variety of stitch patterns along its length, including a segment of cables and some rows of drop-stitch.

The experiment with the second scarf is knots. I wanted to create three-dimensional segments by making strips of scarf that would form knots or with other strips. I chose a place to start a strip, knitting and turning for a three- or four-stitch piece until I had several inches to work with. Then I finished the original row, keeping the piece in its place to form a loop. In some later row I would come close to the width that the first loop arose from and start another strip. When the strip was long enough to reach through the first one and back to it's home row, I would thread it through and then finish it's home row. I did this with vertical and horizontal loops, as you can see in the photos. By the way, that yarn is two lengths worked together, a bamboo from Southwest Trading Company.

Hope this is clearer than mud.

Tuesday, February 22, 2011

This is What Better Feels Like

I think I've described what it's like when I am sick or in a lupus flare. I was treated twice in the past two weeks with a very specific therapy that targets B cells from my immune system. (Those are cells that contribute to lupus, which comes from an overactive immune system.) I tried to pay special attention to what is better now that I've been treated.
Within three days of the first dose, my joint pain improved and my energy increased. At the end of that week I was able to take my first decrease in prednisone dosage. By ten days post-treatment, I was using approximately half the pain medicine as before. In the past week I've done house cleaning and grocery shopping much more easily. I walk faster and I can go to more than one store when necessary. This week I decreased my prednisone again, and with no rebound of symptoms. When I woke this morning I realized that-once again-I can start my day with no pain.
There are a few foundations that help patients like me pay for this treatment. Without their help, my out-of-pocket expense would be more than $8000 per year, impossible for me and my post-recession economitis. Medicare only covers a fraction of the cost. It's a frustrating situation, as my being free of flares means less other medication has to be subsidized by Medicare, my need for expensive physical therapy is reduced, I can care for myself independently in my home, and I have less possibility of side effects from prednisone, which can cause expensive chronic diseases like diabetes and osteoporosis and cardiac disease.
People think of preventive medicine as being about physical exams, vaccines, cholesterol screening, mammograms, Pap smears...For me, prevention is about minimizing the debilitating effects of lupus and of the treatments for lupus. Both kinds of prevention are good for the country's annual health care expenditures.
On the knitting front: Lately I have been consumed with ideas about nontraditional design. I'm trying to throw away some conventions and produce pieces that are more sculptural and texture-driven. I'll get some photos this week and post them.
Peace! All power to the Wisconsin workers!

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, 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.


Saturday, February 5, 2011

Weathering the Flare II

A few days ago I wrote Weathering the Flare, and I made an inadvertent omission. Somehow I forgot to mention the instant pick-me-up. One of the worst feelings when you are dealing with the flares your illness metes out is helplessness. When I don't feel useful, it's hard for me to relate to the world, to find my place in it. I know intellectually that I have value beyond my ability to give, but it drains my confidence and self-worth none the less when I cannot do it. A quick, almost effortless move can fix that. I turn on my laptop and navigate to The Hunger Site. In one minute I can click on all the contribution buttons (Hunger, Breast Cancer, Animal Rescue, Rain Forest, Literacy, Child Health) and sponsors will make small donations to each cause. Instantly I feel the satisfaction of having done my piece to save the world that day. The best thing is that my chronic poverty doesn't stop me from doing my part, either. I just have to pay attention for a minute.

Second in line, and requiring a bit more stamina, is to use my telephone to pick up someone else's spirits. I've noticed that fewer people are using their phones for encouragement and contact. The sound of a human voice is infinitely more comfortable than the buzz of your phone, followed by a two-line text message. Granted, you can text or email in the thick of your busy day when a call would be impossible, but many have convinced themselves that a call is never possible. We need to re-learn the art of the quick, "I'm just checking on you" phone call, and use it frequently. I know this approach requires a little more stamina than clicking on the Hunger Site button, but the extra effort brings a proportionate swell in my sense of having touched another human being and lifted their day. I try never to use this on annoying people who are a drag on my day; those individuals need only be dealt with when I have extra energy and the right frame of mind. Instead, I pick as my target someone who isn't expecting the call and won't abuse it.

It is important to me that my effort have tangible rewards. I don't spend a lot of time throwing prayers up for other people, since they always generate uncertainty of being heard or answered. That's just more stress. Instead, I go for the direct hit of sending cash via sponsors or sending good will by way of a phone call, and I can be sure of my result. Good ol' useful me, saving the world on a daily basis.


Tuesday, February 1, 2011

Weathering the Flare

If you have lupus, you have received information on how to get through a flare. It probably includes advice such as get plenty of rest, perform stretching exercises as tolerated, and avoid over-scheduling. The more difficult part is how to handle the severe disability that you may be experiencing.
My first reaction to having flares of any severity was to arm myself with all the devices and aids that could make my situation easier. I have canes in my car and home, a wheelchair folded in the garage, and devices to reach under beds and onto shelves when I can't bend low or climb on a stool. I also have the requisite housekeeping aids - a Swiffer mop that I can sit down and push around the floor, a rolling stool in the kitchen, a slow cooker for easier meal preparation.
It is much harder to arm yourself mentally and emotionally as the flare drags on. The tools I use here were more slow to develop, and run the gamut from simple repeated thoughts and mantras to complex plans. This morning, as I struggled to make breakfast and worried that I didn't have the motivation to finish, I tried to catalog some of those techniques.
My frame of mind on these days has to be "Do it now, make it better later." With every task that I complete right now, I can see a clear space where my life is easier ten minutes or two hours later. That is powerful motivation for me, seeing that I can make myself a better day with a little effort right now. It is especially helpful since I am alone. I need to reassure myself that I am capable of saving my own day. Having a victim mentality and feeling that I must wait for someone else to make it better would be deadly.
When I was a little girl, I loved The Little Engine That Could. I hope I have the title right. There's no time to look it up. Anyway, the little engine would chug up hills saying "I think I can, I think I can..." I used that in college when I would walk across campus at the end of the day, trudging over to the Peabody College music rooms to practice piano. I would have finished a long day of engineering and premed courses, and deeply desired my piano time, but had little energy for it. I imagined myself to be a steam roller, rolling slowly but relentlessly across the landscape, making my way to Peabody. I would tell myself again and again that I was rolling onward. My current mantra derives from that relentless forward motion and varies from "I'm doing this" to "one more, one more, one more"
I have to be my own best cheerleader. No one is here in the middle of the night to encourage me to get up and take the pain pill that will enable me to move in the morning. I have to say "Come on, Es, you got this!" and then I have to believe it. Faking a positive attitude works just as well as actually having one. As soon as you say the words, you are halfway to finished.
Anyway, all this is on my mind as I prepare to go see the oncologist and get my rituximab today. It's taking all my mental resources to push these aching parts forward, but I have prepared coffee, eaten a bit and taken my medicines, and I'm steeling myself for the bath. After all, if I don't go today, tomorrow will only be worse, and I can't deal with that as long as it is in my control.

Sunday, January 30, 2011

But of Course I Am Still Knitting

I should be thanking the woman who ordered the scarf that is drying on the ironing board. She was insistent on Colinette's Point 5 as a jump-off point, but the addition of several other yarns and a mixture of stitches is what makes it super special. It has me thinking of garments in a different way - more art, less consistency. The bottom left segment is the original Point 5 in the Morocco colorway, knit in a herringbone pattern. Next is a segment of self-striping yarn from Universal, doubled to provide a long, continuous change of colors instead of just the three stripes. The next section is a long swath of Point 5 knit 2 rows at a time, alternating with 2 rows of a dusky rose single. The final portion is the dark purple/red segment in Point 5, with knitted fringe extending several inches in chunky strands.

I am knitting in two directions just now. It is a very cold, snowy winter in most of the U.S. It is going to continue for at least two more months, and I want to keep making warm things. You can see the teal fingerless gloves above, knit from a gorgeous hand-dyed yarn I purchased from On the other hand, the retail cycle has clearly moved to spring and summer and I need to produce a box of samples for Larue's. It will include cool scarves in bamboo and cotton that are decorative and comfortable for warmer weather. The pale lilac lace is a soft, silky bamboo. The multicolored, hand-dyed cotton is that herringbone pattern again, in a Cherry Tree Hill yarn that I believe is discontinued.

Everything I show here is pleasurable knitting. The process of taking the yarn and turning it into something that uses its attributes and becomes a useful, beautiful garment is so pleasing to me. This work is saving my life. In the midst of the pain and fatigue, I have something to grow.


Sick and Angry...and Sick

Every part of me hurts. It was torture getting out of bed and back in this morning. My hands are stiff and my fingers ache. Yesterday I ran out of steam in the old way, finding myself only able to sit and look. I have been on increased doses of prednisone for two months with no relief from this flare. This is how it used to be, the long flares I was accustomed to before I started taking rituximab.

When I began rituximab, we quickly determined that six month intervals between treatments allowed my flares to recur. My treatments were scheduled for every three to four months, and I had some blissfully better years. I was making progress with my life, enjoying some social activities, working much more capably in my home. I could see this concretely in better meal preparation, housekeeping and mental function. Then my rheumatologist decided that every six months was better for me. My last treatment was August. I am an angry mess. I don't know why I had to go through this again. Frankly, if there are long-term consequences to taking this medication more frequently, I am willing to trade them for the short-term life that it brings me.

I saw my psych guy this week. I can't call him a therapist. He is a drug manager. He gets a 30-minute update every three months and decides of my medications should be changed. No therapy involved. I realized after the visit that I must have sounded angry about everything - my health, my finances, my family, politics, injustices my daughter has recently suffered at school. I was a smiling, angry person.

I think what I was feeling was impotence. I am sick and I know it could have been avoided and I can't make the decisions that control that. I am in the typical patient position of being afraid to contradict the doctor too strongly, for fear that I will never get what I want and need. I need to be "good" and let him do his six-month experiment, and then be grateful that I am finally at the end of it this week. This sucks.

I have seen other patients in this position, and I encouraged them to go shopping. I may need to do the same. I have pushed others to treat the medical office like they treat a grocery store - if you feel that you are being mistreated, if your needs are not being met, if your questions are not answered - try somewhere else. Now I am looking at it with limited financial resources and the insurance least desired in physician offices, and trying to decide if I should do the same. I will speak to my doc first. We've always had good rapport, and I think a conversation is preferable to defecting without warning. I hope I won't have to shop. But I can't endure this again.


Saturday, January 8, 2011

Daddy Is Gone

Here I am, a month later, and again someone has died. This time it's my father, a precious, wonderful man who made his family the most important thing in his life. He raised six daughters and left each of us feeling our own special connection to him. In his later years he worked to strengthen those connections, calling us, telling us how important we were to him, always reminding us that he loved us. Even as he was dying, word from one of his daughters made him smile and his voice would get stronger: "Baby girl! My baby girl said that?" One of the last coherent things he told me was "All my children are great. All my children are great."

We marked his death in stages. We were women observing and discussing, and we noted every change and worried about its significance. There was his diminished appetite, and then dwindling intake, and finally refusal to eat. He lost weight, and his doctor confirmed that his chronic kidney failure had worsened significantly. Then he was unable to walk. In bed, he woke to acknowledge us and ask for water, ever appreciative of each sip that we gave him. "Nothing like cold water. That's some good water." Finally he slipped away, never really waking, no longer seeing us even when he opened his eyes.

He spent those last days at home, able to decide for himself when he would no longer seek medical help or go to the hospital. My heroic sister rearranged her life and made it possible for the parents to live in their home until they die. When I go there today his empty hospital bed will make me cry again.

I cry in spells. It hits me without warning, the blessing of his life, his 92 years, the pain of his leaving. I blow my nose and keep moving. He taught us everything about living and being useful, and nothing about sitting still and grieving.