It may seem unlikely, but one of the problems I have with systemic lupus is that I can't always tell if I am sick. When I feel a new ache or pain, or have a day that ends in severe fatigue, or "lose" a few words in the recesses of my brain, it may simply be an ordinary day with a few inconvenient symptoms. If the symptoms persist over several days and some tell-tale iconic signs arise, I suspect it is a flare. For me those signs are painful feet, an ache in my sacroiliac joints and feeling feverish in the evening.
Those signs are not very specific and sometimes I am still not sure if the disease is "flaring", or becoming very active. Moreover, I'm attached to my healthy time and dread being sick. 22 years of this cycle has not given me an ounce of real acceptance, only resignation and dread. Frequently this leads to some foot-dragging in acknowledging that I am sick again, and a delay starting the necessary high-dose steroids.
Last week I noticed some symptoms, said "Here it comes," and increased my prednisone immediately. My thoughts floated above the usual anxiety and indecision. I rested when I felt the need, kept as busy as possible and focused on the coming knitting business season. Is this some kind of crazy grown-up thing?
The coming season starts next week when I set up a display of products for sale at the new Merchants Warehouse in Chattanooga. It is home for many local makers and a few small antique sellers. It is my first opportunity in this kind of sales venue, where I rent space in a retail emporium that is open every day, staffed with lovely, welcoming people. I will be free to stay home to design and make new products, with a periodic check on my inventory. Joy! A business change that doesn't require a strong back!
Photos soon.
Peace.
Showing posts with label systemic lupus. Show all posts
Showing posts with label systemic lupus. Show all posts
Monday, August 26, 2013
Monday, December 31, 2012
Countdown to 2013
2013 is hours away and I am excited. The total toll of 2012 was rough, but it left me with two things: improved physical condition, and a better heart.
Back in the spring, an $11 per month gym caught my attention. Just five minutes from my house and open 24 hours per day, every day of the year, it overcame all of my barriers to exercise. When I began I chose a few minutes on the treadmill and a few strength-building weight machines. I gradually worked up to 20-30 minutes on either the treadmill or recumbent bike, and a regular sequence of upper and lower body weight machines. It only took a month of twice weekly visits for me to notice an increase in leg strength. My endurance increased rapidly, too. I had to stop for a while in late summer and early fall due to a series of skin Candida infections, but I didn't lose the benefits. As I finish the year, I can climb stairs using both legs without relying on the handrail, I can go down stairs without a rail to check my balance, and I get off the floor much more easily.
This conditioning was the basis for my ability to work more frequently at the market. It takes strength and endurance to load and unload, set up and take down all the equipment to make my store each week. In the past I could only do it with a significant amount of help. Now I can go to market alone and handle all my equipment, and a day of working in my store doesn't make me take to my bed for the next three days.
It still remains that my illness can crop up at any minute and change my plans and keep me down for weeks, but it doesn't deplete my strength to the point that I must start from scratch and feel so disabled for so long.
The other benefits are probably obvious - I can get out more with friends, do household chores and run errands, and the additional strength is a confidence builder.
This other thing-the better heart-is a trickier concept. First, let me say that I don't believe that "What does not kill me, makes me stronger". I don't know what Nietzsche was talking about, but I rarely see anyone who damn near died feeling stronger, at least not for a long time. So I don't mean that the crap we were mired in this year left me a stronger person. Instead, the ring of loving people around me helped to protect me from the pervasive crap, and with that protection, I was allowed to grow and do some good and not sink into the mire. Having that special ring of friends and family is a palpable thing for me-in my mind I can feel their love and support, and I know they wish me well. They buoy my daughter and me, share their own strength and heart, so I am not depleted. God is also there, making us all better than the molecules that form our flesh. She infuses us with the desire to stay alive and make life count, to stay connected and be part of that caring circle, feeling and supporting and giving, communing, and altogether radiating something lighter and better.
2013 is for that lighter, better thing. Peace.
Back in the spring, an $11 per month gym caught my attention. Just five minutes from my house and open 24 hours per day, every day of the year, it overcame all of my barriers to exercise. When I began I chose a few minutes on the treadmill and a few strength-building weight machines. I gradually worked up to 20-30 minutes on either the treadmill or recumbent bike, and a regular sequence of upper and lower body weight machines. It only took a month of twice weekly visits for me to notice an increase in leg strength. My endurance increased rapidly, too. I had to stop for a while in late summer and early fall due to a series of skin Candida infections, but I didn't lose the benefits. As I finish the year, I can climb stairs using both legs without relying on the handrail, I can go down stairs without a rail to check my balance, and I get off the floor much more easily.
This conditioning was the basis for my ability to work more frequently at the market. It takes strength and endurance to load and unload, set up and take down all the equipment to make my store each week. In the past I could only do it with a significant amount of help. Now I can go to market alone and handle all my equipment, and a day of working in my store doesn't make me take to my bed for the next three days.
It still remains that my illness can crop up at any minute and change my plans and keep me down for weeks, but it doesn't deplete my strength to the point that I must start from scratch and feel so disabled for so long.
The other benefits are probably obvious - I can get out more with friends, do household chores and run errands, and the additional strength is a confidence builder.
This other thing-the better heart-is a trickier concept. First, let me say that I don't believe that "What does not kill me, makes me stronger". I don't know what Nietzsche was talking about, but I rarely see anyone who damn near died feeling stronger, at least not for a long time. So I don't mean that the crap we were mired in this year left me a stronger person. Instead, the ring of loving people around me helped to protect me from the pervasive crap, and with that protection, I was allowed to grow and do some good and not sink into the mire. Having that special ring of friends and family is a palpable thing for me-in my mind I can feel their love and support, and I know they wish me well. They buoy my daughter and me, share their own strength and heart, so I am not depleted. God is also there, making us all better than the molecules that form our flesh. She infuses us with the desire to stay alive and make life count, to stay connected and be part of that caring circle, feeling and supporting and giving, communing, and altogether radiating something lighter and better.
2013 is for that lighter, better thing. Peace.
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 http://essiewb.etsy.com and child/baby items with http://turtletots.etsy.com. 
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!
Peace.
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!
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, January 30, 2011
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.
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.
Friday, November 19, 2010
The Busy Season and the Bad, Bad Knees
A few minutes ago, I picked up the beret I was knitting and stitched my way about one-fourth of a round. Suddenly I realized that my cables had disappeared. I had turned over the hat and stitched on the wrong side. I took out the errant stitches and decided it was time for a break. I've been knitting furiously for days. Yesterday I finished an earflap cap in organic cotton, then immediately started a bright beret in Noro Silk Garden and Silk Garden Lite. When I finished the beret, I wanted to line up work for today, and I grabbed a ball of Kureyon and began the band for another beret.
That's the pace I've been keeping. This is my busy season and I want to have plenty of beautiful pieces on my table at the Market and in my Etsy store, as well as my custom pieces for Larues. It makes my heart swell to see a piece turn out better than I imagined, and I've vowed to only produce things that I love. Unfortunately, if I keep running my body like a machine, I'll end up with tendinitis and have to take a prolonged rest instead of this morning break.
Last night I struggled with my plans for the remainder of the season. I had hoped to sell at the Market weekly until the middle of December, but the first two weekends wore me down a good bit and pointed out the severe difficulty with my arthritic knees. I've written a good many "doctor notes" advising people to stop activities that are not good for their conditions, but I can't afford to have one for myself right now. I can only pay my bills if I add handiwork to Social Security. I'll have to keep working on opportunities to sell my work that don't involve lugging many pounds of heavy equipment, loading it in and out of my car, setting up and taking down my equipment and products and the long hours in the booth doing customer service (my favorite part of market sales).
With this disease, I find myself compromising at times. Take the knees. For more than a month I've endured the severe pain and difficulty standing and walking. I didn't want them injected with steroids because I know the effect it has on my metabolism and weight. Finally, last week I gave in and started a hefty steroid taper, taking my prednisone up to 40 mg daily and gradually bringing it down over two weeks. If I had been in town I could have gone to my rheumatologist for intraarticular injections, but I was out of town and had to settle for increasing steroids orally. My knees are better and I'm not hollering when I stand up. It makes me much better company. The compromise is in dealing with side effects. Makes me want to growl.
Today is lesson day. The two young girls that I am teaching will be over after school. It's good incentive for me to do some picking up. I can get so focused on work that my home (which is my workplace) is neglected. My Hoover could use a bit of work.
Today I'm writing about such ordinary stuff that I wonder why it should be here. My life is ordinary with the usual hassles that affect everyone. They don't go away because I have lupus or because I'm neck-deep in a new creative venture. Sometimes I'd like to daydream them away. Hah.
Peace.
That's the pace I've been keeping. This is my busy season and I want to have plenty of beautiful pieces on my table at the Market and in my Etsy store, as well as my custom pieces for Larues. It makes my heart swell to see a piece turn out better than I imagined, and I've vowed to only produce things that I love. Unfortunately, if I keep running my body like a machine, I'll end up with tendinitis and have to take a prolonged rest instead of this morning break.
Last night I struggled with my plans for the remainder of the season. I had hoped to sell at the Market weekly until the middle of December, but the first two weekends wore me down a good bit and pointed out the severe difficulty with my arthritic knees. I've written a good many "doctor notes" advising people to stop activities that are not good for their conditions, but I can't afford to have one for myself right now. I can only pay my bills if I add handiwork to Social Security. I'll have to keep working on opportunities to sell my work that don't involve lugging many pounds of heavy equipment, loading it in and out of my car, setting up and taking down my equipment and products and the long hours in the booth doing customer service (my favorite part of market sales).
With this disease, I find myself compromising at times. Take the knees. For more than a month I've endured the severe pain and difficulty standing and walking. I didn't want them injected with steroids because I know the effect it has on my metabolism and weight. Finally, last week I gave in and started a hefty steroid taper, taking my prednisone up to 40 mg daily and gradually bringing it down over two weeks. If I had been in town I could have gone to my rheumatologist for intraarticular injections, but I was out of town and had to settle for increasing steroids orally. My knees are better and I'm not hollering when I stand up. It makes me much better company. The compromise is in dealing with side effects. Makes me want to growl.
Today is lesson day. The two young girls that I am teaching will be over after school. It's good incentive for me to do some picking up. I can get so focused on work that my home (which is my workplace) is neglected. My Hoover could use a bit of work.
Today I'm writing about such ordinary stuff that I wonder why it should be here. My life is ordinary with the usual hassles that affect everyone. They don't go away because I have lupus or because I'm neck-deep in a new creative venture. Sometimes I'd like to daydream them away. Hah.
Peace.
Saturday, September 11, 2010
Today I Was Ugly
Today I was ugly. Not physically - I was well-groomed and matching and had a new product in my hair - but emotionally. I was irritable and once rubbed the wrong way, there was yukky resentment bubbling inside my head. A friend at knitting complained about her job, and all i could think was what a blessing it is to be able to work. She named some legitimate things that are a problem with her work; inside I said "You should be glad you can work." She complained about her schedule; "Hell, my schedule is totally dependent on what my body and this disease are doing today." She continued to complain, "Jeez, would you suck it up, you big baby." I just didn't have graciousness and light in me today. Thank goodness I was holding it in, although I think the tone of some of the thoughts I actually uttered was not the most generous.
I've been struggling. This long ordeal with having a sudden worsening in my health, and having to set a new standard for making myself deal with pain and fatigue and disability, it has just been wearing me down. Lately I ask myself every day why people do this, if there's a point, if it is worth it. So far my answers have always been "because we have to", "yes" and "yes", but will I get to a day when those answers change? It's just so damn hard, all of it. The sitting down and the standing up. The awakening and the laying down to sleep. The cooking, the fetching, the dressing, the washing. The household chores.
But the past week has brought some relief, even if it hasn't completely chased away my doubts. My arm feels stable again. I no long feel that nagging weakness and feeling that things are out of place. I am confident when I raise my arm that the muscles won't spasm and make the fracture shift and make me scream. I can reach for something without wondering how it will go, or whether I should have used my left hand. Pain is still there, but not gnawing at the bone, keeping me awake and making it impossible to sit still.
Other good things have moved me this week. My knitting is better. My hands no longer feel like they are accommodating a weak link when I hold the needles. I can knit my usual hours and end a day feeling okay, able to get up the next morning and knit again. I've especially enjoyed my baths, as I can trust myself to lie back and put my head in the water and relax. No arm spasm will interrupt and make me flail and catch my breath in fear.
I Skyped with my daughter today. You might think we do it all the time, but sometimes the missing is too intense, and neither of us can tolerate a flood of tears and the dredging up of sadness. We talked for an hour. She toured me around her apartment. She showed me classwork she has completed, fascinating now that she is creating every day in so many ways. The photo is a piece of cloth that she dyed to match a flowered shirt, an assignment for her fabric class. And she made me laugh my ass off. Falling over, bellowing, not carrying how I looked laughing. It washed out some of the ugly. Maybe most of it. I feel inspired now, to do something interesting. I'm going to experiment with some slip stitch crochet that I just read about. My evening will be fun, and hopefully I won't be wondering if this day was worth it.
Peace.
Wednesday, September 8, 2010
A Day for Action
It's been ages since I woke like this - alert, moving, ready to go. I've had a series of minor setbacks with the body, plus been through a round of rituximab treatment. I felt like I was putting fingers in multiple dikes, just trying to make it to the next hour, next day...a painful way to survive. No thriving involved. But today (courtesy of lots of meds and a good night's sleep) I am good. I'm actually waiting for the post office and drug store to open so I can do the errands that I want to complete before it hits 90 degrees again.
I have so much going on in the knitting arena that I have to list it to make sure I'm pushing each project forward: one custom cape, one custom afghan, one custom baby ensemble, patterns and ideas for my book, a box of products to post to a northern boutique for consideration, a couple of local Christmas markets to apply to, and refreshing my Etsy store with new photos and products. At some time in the past this knitting thing officially crossed the line from hobby to business. Now I'm trying to make it a profitable business, and sell more wisely.
One thing the broken arm has taught me - don't rely so much on physical methods of doing business. I have not been able to return to selling at the Chattanooga Market, and I don't know if I'll be ready by the end of the season. My days of heavy lifting and tedious setups in bad weather may be over. We'll see. The arm has made progress, maybe the rest of me will move forward a bit, too.
My girl is safely off to school in Georgia, three hours away. It's a blessing. She loves the UGA art school and sends me teeny phone photos of her work. Our conversations about ideas and creating stimulate my work and make me think of new ways to do things. Seeing the way she tends to the tiniest detail on her drawing and fabric work reminds me that I can do much more embellishing with my knitted items. I even have plans for some embroidery on pieces that I'll publish in the book.
The loneliness from my daughter's absence is a lesson to be learned all over again. She was here for a year, and I forgot the void that her leaving creates. Moreover, the past two months my sweet pooch was cared for by a friend while my arm recovered enough to be the caretaker again. I have talked to the walls and the television set and mostly to myself during this time. I've had to learn again how to laugh by myself, and how to breathe out the pain and sadness and let myself be okay. Some of us are created to be social, and it is a struggle to be physically restrained from that. My body as anchor, keeping me rooted to this spot...
I have had more than enough thinking time. I have come to terms with the fact that desire and will power and hard work may not be enough to reign in my weight problems. I'm totally satisfied with the way I am managing it, trying to keep my prednisone low, moving when I can and cooking healthy meals. I must accept that when I get on my bike for 10 minutes and then have a week of inflammation in my knee, it is beyond my control. Yoga? Chair yoga is my next exploration. I so want to lose. Even 50 pounds would make it easier to get around and care for myself. I've cut some real favorites out of my pantry (peanutbutter!) and stocked up on high-fiber ingredients. The price of tofu just dropped dramatically at one of my favorite groceries, and I'm learning more ways to enjoy it. Curry is in my kitchen vocabulary, and I'm baking regularly instead of buying $7 loaves of bread. My strawberry muffins are to be envied.
Can you have a fling in your mind? An old flame has been in touch, and reminded me of the positives in our relationship, long past. For a few weeks I entertained thoughts of us together, brought to an abrupt stop by some recurrences of behavior that is intolerable for me. I didn't have to think twice about mentioning this here - one huge incongruity in our non-relationship is his refusal to learn any computer function beyond email. Oh well...
Enough supposing. This day is for action! Peace!
I have so much going on in the knitting arena that I have to list it to make sure I'm pushing each project forward: one custom cape, one custom afghan, one custom baby ensemble, patterns and ideas for my book, a box of products to post to a northern boutique for consideration, a couple of local Christmas markets to apply to, and refreshing my Etsy store with new photos and products. At some time in the past this knitting thing officially crossed the line from hobby to business. Now I'm trying to make it a profitable business, and sell more wisely.
One thing the broken arm has taught me - don't rely so much on physical methods of doing business. I have not been able to return to selling at the Chattanooga Market, and I don't know if I'll be ready by the end of the season. My days of heavy lifting and tedious setups in bad weather may be over. We'll see. The arm has made progress, maybe the rest of me will move forward a bit, too.
My girl is safely off to school in Georgia, three hours away. It's a blessing. She loves the UGA art school and sends me teeny phone photos of her work. Our conversations about ideas and creating stimulate my work and make me think of new ways to do things. Seeing the way she tends to the tiniest detail on her drawing and fabric work reminds me that I can do much more embellishing with my knitted items. I even have plans for some embroidery on pieces that I'll publish in the book.
The loneliness from my daughter's absence is a lesson to be learned all over again. She was here for a year, and I forgot the void that her leaving creates. Moreover, the past two months my sweet pooch was cared for by a friend while my arm recovered enough to be the caretaker again. I have talked to the walls and the television set and mostly to myself during this time. I've had to learn again how to laugh by myself, and how to breathe out the pain and sadness and let myself be okay. Some of us are created to be social, and it is a struggle to be physically restrained from that. My body as anchor, keeping me rooted to this spot...
I have had more than enough thinking time. I have come to terms with the fact that desire and will power and hard work may not be enough to reign in my weight problems. I'm totally satisfied with the way I am managing it, trying to keep my prednisone low, moving when I can and cooking healthy meals. I must accept that when I get on my bike for 10 minutes and then have a week of inflammation in my knee, it is beyond my control. Yoga? Chair yoga is my next exploration. I so want to lose. Even 50 pounds would make it easier to get around and care for myself. I've cut some real favorites out of my pantry (peanutbutter!) and stocked up on high-fiber ingredients. The price of tofu just dropped dramatically at one of my favorite groceries, and I'm learning more ways to enjoy it. Curry is in my kitchen vocabulary, and I'm baking regularly instead of buying $7 loaves of bread. My strawberry muffins are to be envied.
Can you have a fling in your mind? An old flame has been in touch, and reminded me of the positives in our relationship, long past. For a few weeks I entertained thoughts of us together, brought to an abrupt stop by some recurrences of behavior that is intolerable for me. I didn't have to think twice about mentioning this here - one huge incongruity in our non-relationship is his refusal to learn any computer function beyond email. Oh well...
Enough supposing. This day is for action! Peace!
Wednesday, April 28, 2010
The Way It Goes on a Bad Day
This is how it goes. Your medicines are getting low. You call in for refills. One of your medicines needs prior approval, the pharmacist informs you. They will call the doctor's office and request it. Two days later, you drive to the pharmacy. None of your refills are ready. The tech doesn't know why. Please come back later. You drive back later, and one medicine is ready. The Medicare drug plan denied approval for the other, and it costs $243 for half a month's supply. "Never mind." You take the other and go.
The drug you can't get is Lidoderm, a newish pain medicine that works well for you. You slap on a patch, the lidocaine soaks in through the skin and relieves the pain underneath for 12 hours. No addiction, no side effects, no fuss. You could take a huge dose of narcotic pain medicine and get the same relief, but it has obvious drawbacks - nausea, drowsiness, the risk of physical dependency. Unfortunately, the insurance company doesn't care. Lidoderm is expensive, generic pain pills are cheap.
You go home and get out the computer. You have to research this. How do you make an appeal to that Medicare Part D provider? Does the drug company have a patient assistance program for people who can't afford their medicine? Did your doctor say the wrong thing in trying to obtain the approval? Lots of angles to attack.
So today you have knitted and washed clothes and changed bedclothes and cleaned up the kitchen. You made salmon patties for dinner. You let the dog in and out, in and out and fed her. You bathed, cleaning the bathtub after. You did the appropriate maintenance to live in your home and care for yourself. All this with severe pain in your joints and no patches.
In addition, you have taken all your meds, watched your diet, logged your activity and exercise.
This is why people with chronic illness get depressed and discouraged. It's not just about knowing what's wrong and how to fix or manage it. It is about mind-numbing interactions with people who don't give a damn that their mistakes make your life miserable. It's about dealing with businesses that have all the power over your health and won't use their deep pockets to give decent care without it being legislated and enforced. And about trying to keep your finances together after more people who were selfish and greedy used your money to line their deep pockets and drained your resources.
Today my ears are ringing (they have been for two years), my sacroiliac joints hurt, my bath made me tired, and my brain is holding too many thoughts. I had to get my joy from my daughter, my new power tool toothbrush, knitting baby hats, and still being alive. The margin is very narrow.
Peace.
The drug you can't get is Lidoderm, a newish pain medicine that works well for you. You slap on a patch, the lidocaine soaks in through the skin and relieves the pain underneath for 12 hours. No addiction, no side effects, no fuss. You could take a huge dose of narcotic pain medicine and get the same relief, but it has obvious drawbacks - nausea, drowsiness, the risk of physical dependency. Unfortunately, the insurance company doesn't care. Lidoderm is expensive, generic pain pills are cheap.
You go home and get out the computer. You have to research this. How do you make an appeal to that Medicare Part D provider? Does the drug company have a patient assistance program for people who can't afford their medicine? Did your doctor say the wrong thing in trying to obtain the approval? Lots of angles to attack.
So today you have knitted and washed clothes and changed bedclothes and cleaned up the kitchen. You made salmon patties for dinner. You let the dog in and out, in and out and fed her. You bathed, cleaning the bathtub after. You did the appropriate maintenance to live in your home and care for yourself. All this with severe pain in your joints and no patches.
In addition, you have taken all your meds, watched your diet, logged your activity and exercise.
This is why people with chronic illness get depressed and discouraged. It's not just about knowing what's wrong and how to fix or manage it. It is about mind-numbing interactions with people who don't give a damn that their mistakes make your life miserable. It's about dealing with businesses that have all the power over your health and won't use their deep pockets to give decent care without it being legislated and enforced. And about trying to keep your finances together after more people who were selfish and greedy used your money to line their deep pockets and drained your resources.
Today my ears are ringing (they have been for two years), my sacroiliac joints hurt, my bath made me tired, and my brain is holding too many thoughts. I had to get my joy from my daughter, my new power tool toothbrush, knitting baby hats, and still being alive. The margin is very narrow.
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.
Saturday, December 26, 2009
December 26
Day after Christmas. In my mental barometer yesterday ranks as good, low pressure. That figures large in the way I'm spending today. I had dessert for breakfast, another dessert for lunch, a long nap in between. I'm not rushing to see anyone that I missed yesterday, nor am I hustling to get to knitting group. My daughter is with me, we're watching King Kong, there's peace in the house.
I think I've perfected the dessert-for-meal thing. I used to conscientiously eat a meal in order to get the desired dessert, netting twice the calories (or more). Now I eat what I want and stop there. If the desire is for something other than dessert, the principle still applies: eat the dressing, leave the turkey and greens and corn. It's a strategy.
Yesterday I saw my little old parents. This is their first Christmas with both of them in their nineties, and my sister had made it perfect for them. They sat in their living room, surrounded by piles of gifts, both wearing festive touches supplied by my sister - a light-up necklace for Daddy, a red flowered headband for my mom. They were delighted by their special day, the visitors, the love from family. I made a short video to preserve the happy time.
I cooked and entertained more this holiday than in the past five or eight years. I stopped for rest when I needed it, then resumed my activity. I am incorporating my ten minutes of biking each day without undue strain. This morning I felt the pain of achy foot pads and the difficulty of motivating myself to action. I stopped to think about it for just a minute. I have so much to get up for, so many reasons to keep moving, it has become automatic. I don't have to stop and brace myself before putting my feet on the floor. Forward, forward.
Peace. Happy holidays.
I think I've perfected the dessert-for-meal thing. I used to conscientiously eat a meal in order to get the desired dessert, netting twice the calories (or more). Now I eat what I want and stop there. If the desire is for something other than dessert, the principle still applies: eat the dressing, leave the turkey and greens and corn. It's a strategy.
Yesterday I saw my little old parents. This is their first Christmas with both of them in their nineties, and my sister had made it perfect for them. They sat in their living room, surrounded by piles of gifts, both wearing festive touches supplied by my sister - a light-up necklace for Daddy, a red flowered headband for my mom. They were delighted by their special day, the visitors, the love from family. I made a short video to preserve the happy time.
I cooked and entertained more this holiday than in the past five or eight years. I stopped for rest when I needed it, then resumed my activity. I am incorporating my ten minutes of biking each day without undue strain. This morning I felt the pain of achy foot pads and the difficulty of motivating myself to action. I stopped to think about it for just a minute. I have so much to get up for, so many reasons to keep moving, it has become automatic. I don't have to stop and brace myself before putting my feet on the floor. Forward, forward.
Peace. Happy holidays.
Monday, November 2, 2009
Am I Moved YET?
Holy cow. No, that's not it. HOLY COW! That's better. I've had three reschedules from my mover, followed by an incomplete removal of the last few items from my house. The trunk of my car (a rapidly aging Volvo sedan) contains ten cans of paint+kitty litter (don't ask). There is only a two-foot wide path through my new garage from the door to the driveway. My piano is in the garage. I've checked here on HGTV but there is no "how to" that will fix this.
On the bright side, this is the end. The End. Closing is this week. I will take a break before closing on the new house, which I have leased til now. I have no deadline for hanging pictures, unpacking winter clothes, getting the remainder of the books onto bookshelves. There is only what my sensibilities will tolerate, and I am feeling pretty darn flexible. I won't cry if I can't get Ringgold and Joysmith and Ali on the walls today. No, I am not hallucinating. I have a Mohammad Ali limited edition print from his art period. He hadn't moved much past keeping it in the lines, but the idea that he attempted it charms me.
Oops, relaxed too soon. I went back to the new house this afternoon to deal with a pile of stuff shoved in the attic by unnamed young people staying in the guest room. It includes enough hangars for the Russian army and some used sheets which were "stored" there instead of washed. 'Nuff said. There is nothing in Spock about this.
So...I'm on a first name basis with the receiver at my favorite center to donate unwanteds. He saw me coming today, waved and almost smiled. An almost smile is the max for him. When you see him collecting things from your car one bag at a time, you know that he doesn't waste any muscle movement. We're starting to get very real about the things that can go. I had a carload today and I'm sure I'll have another tomorrow. I am all about knowing that the memory will be with me always. I don't need any more physical reminders of anything.
Mary Z reminded me the other day about using professional shredders. They'll be here tomorrow. I see 10 more cubic feet of space becoming available!
I met my buyers today. That ordinarily doesn't happen until closing, but I've let them out of motel hell with their young baby to live in the house a few days beforehand. I think the baby likes me. He was all red hair and smiles. Me and mom talked about knitting.
I did a good bit of knitting in the drive-through pharmacy line just now. I've never seen the lines so long, wondered if it is an H1N1 epidemic thing. Glad I started a hat from my pink Therapi (the yarn with merino, silk and jadeite fiber). I managed to do all the increases that will go from the head band to the start of the flare for the kind of beret shape (knit 1, yarn over, knit into the front and back) and repeat all the way around. Turn on the car, move one spot, pick up your needles.
Keeping up the surviving. Peace.
On the bright side, this is the end. The End. Closing is this week. I will take a break before closing on the new house, which I have leased til now. I have no deadline for hanging pictures, unpacking winter clothes, getting the remainder of the books onto bookshelves. There is only what my sensibilities will tolerate, and I am feeling pretty darn flexible. I won't cry if I can't get Ringgold and Joysmith and Ali on the walls today. No, I am not hallucinating. I have a Mohammad Ali limited edition print from his art period. He hadn't moved much past keeping it in the lines, but the idea that he attempted it charms me.
Oops, relaxed too soon. I went back to the new house this afternoon to deal with a pile of stuff shoved in the attic by unnamed young people staying in the guest room. It includes enough hangars for the Russian army and some used sheets which were "stored" there instead of washed. 'Nuff said. There is nothing in Spock about this.
So...I'm on a first name basis with the receiver at my favorite center to donate unwanteds. He saw me coming today, waved and almost smiled. An almost smile is the max for him. When you see him collecting things from your car one bag at a time, you know that he doesn't waste any muscle movement. We're starting to get very real about the things that can go. I had a carload today and I'm sure I'll have another tomorrow. I am all about knowing that the memory will be with me always. I don't need any more physical reminders of anything.
Mary Z reminded me the other day about using professional shredders. They'll be here tomorrow. I see 10 more cubic feet of space becoming available!
I met my buyers today. That ordinarily doesn't happen until closing, but I've let them out of motel hell with their young baby to live in the house a few days beforehand. I think the baby likes me. He was all red hair and smiles. Me and mom talked about knitting.
I did a good bit of knitting in the drive-through pharmacy line just now. I've never seen the lines so long, wondered if it is an H1N1 epidemic thing. Glad I started a hat from my pink Therapi (the yarn with merino, silk and jadeite fiber). I managed to do all the increases that will go from the head band to the start of the flare for the kind of beret shape (knit 1, yarn over, knit into the front and back) and repeat all the way around. Turn on the car, move one spot, pick up your needles.
Keeping up the surviving. Peace.
Saturday, October 31, 2009
Prednisone Blindside Response
I have been perplexed. The past few weeks I've noticed increased appetite and disrupted sleep. Increased appetite is an understatement. I've been ravenous. My usual lay down, close eyes, and fall asleep routine has been failing, and I awaken in the early morning, hungry and unable to return to sleep. I blamed it all on the extraordinary circumstances of my packing and moving, the excitement of house sale and new house. Tonight I it all came to a head. I was upset at my hungriness and the way it prevented sleep, and beginning to despair of having any improved health from my increased activity if all it meant was more appetite. As I bit into my low-cal, high-fiber, whole grain English muffin it hit me - my steroid dose is up. This is a sneaky steroid increase. I'm not taking a higher dose of prednisone. My oral dose remains at its baseline, not enough to cause these symptoms. However, almost three weeks ago I had a joint injection - a large dose of steroid (corticosteroid) medication was inserted directly into my left knee joint to treat an acute flare. We do this kind of treatment to put the medication directly where it is needed and to minimize the systemic affect of the meds, but a goodly portion is still absorbed into the bloodstream and disseminated to the rest of the body.
I am greatly relieved to realize the source of my symptoms. I've had such an increase in activity that I'm hoping to see better overall health. I thought it was being thwarted by my need to eat more, but now I know it is temporary. Moreover, having insomnia and being on an irregular schedule has never been good for my lupus. Keeping the wolf under control is much easier with adequate rest and a predictable meal, sleep and medication schedule. I should be close to getting over the steroid symptoms. One way I've been fighting them is to feed my appetite with huge amounts of plain steamed vegetables. My Publix had a $1 sale on microwavable vegetable packs, found in the produce section. I scooped up a pile and I indulge in them liberally. I also invested in several cases of my favorite sparkling water (yes, at $4 for 12 cans, it's an investment), and I fill up on bubbles.
A disease that has affected you for 17 years isn't going to be controlled or conquered overnight. I'm happy for every little insight that helps me manage better, even if it comes at 3 a.m.
Peace.
I am greatly relieved to realize the source of my symptoms. I've had such an increase in activity that I'm hoping to see better overall health. I thought it was being thwarted by my need to eat more, but now I know it is temporary. Moreover, having insomnia and being on an irregular schedule has never been good for my lupus. Keeping the wolf under control is much easier with adequate rest and a predictable meal, sleep and medication schedule. I should be close to getting over the steroid symptoms. One way I've been fighting them is to feed my appetite with huge amounts of plain steamed vegetables. My Publix had a $1 sale on microwavable vegetable packs, found in the produce section. I scooped up a pile and I indulge in them liberally. I also invested in several cases of my favorite sparkling water (yes, at $4 for 12 cans, it's an investment), and I fill up on bubbles.
A disease that has affected you for 17 years isn't going to be controlled or conquered overnight. I'm happy for every little insight that helps me manage better, even if it comes at 3 a.m.
Peace.
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