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!

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.

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.

Peace.

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.
Peace.

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 http://kittygrrlz.etsy.com. 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.

Peace.

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.

Peace.

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.