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.
Saturday, January 8, 2011
Wednesday, December 8, 2010
Good-bye Elizabeth Edwards
Elizabeth Edwards died yesterday. She was prepared, had her family and friends around her, and had made all her good-byes. I didn't know her personally but I knew her situation. She put a face on the woman who was left by her husband after a terrible diagnosis.
Of all the parts of traditional marriage vows, the "in sickness and in health" seems to me to be the touchiest. When men promise to stay under those conditions, they rarely know what they are talking about. Most haven't been caretakers, don't have that nurturing mothering instinct that women seem to have, and have not been periodically assaulted by their bodies with normal occurrences like pregnancy and menstruation.
I was a woman like Elizabeth Edwards - a professional woman who had managed a career and family, with a good income and personal health. I ran and played tennis and did sit-ups with my toddler sitting on my belly. I hiked with my baby in a Snuggly. That was my baseline when I was diagnosed with lupus at 35.
The diagnosis hit like a brick. I already knew that I was ill, because my ability to run and play tennis and even walk had been compromised and I was in pain daily. But the knowledge that I had a disease that wasn't going to go away...whole new ballgame. My dearly beloved didn't crack a book to learn about the diagnosis or what to expect, or to learn what living with chronic illness could be. That means the good and the bad were unknowns for him. I tried to put pamphlets and information in his hands, to no avail. Without a more objective guide, his perspective came from day to day changes and challenges.
Long story short, we were divorced within two years. Long sad story.
When your man leaves you before you get a chance to even adjust to the new circumstances, you are viewed with sympathy and pity, like Elizabeth Edwards in the vast public eye. She held it together and kept a wonderful dignity and calm-no public bashing of John, a wise acceptance of the fact that he would continue to be the father of her children and their caretaker after she was gone, and still a public presence that didn't give in to tragedy and hurt.
In my practice and in my life, I have seen the abandoned women often, and yet I can name only a few men in the same situation. Many, many times a man with chronic illness was accompanied by the woman in his life, who often knew more about his disease than he did. She was inevitably a positive force, helping with his care when necessary, picking up the financial slack by working harder or returning to the workforce, making a way for the children to continue a relationship with the sick parent. I do not fault these women; it is the way it should be, in my view. But the dichotomy sickens me. For someone to say "you are not the woman I married, you are weaker, less attractive, less able to give to me, less able to earn"-juvenile and sickening. And all too common. Makes me want to say "Suck it up, little boys, the world isn't your playground every day of your life. Grow a pair and hang in."
Sigh.
Peace. If you can.
Of all the parts of traditional marriage vows, the "in sickness and in health" seems to me to be the touchiest. When men promise to stay under those conditions, they rarely know what they are talking about. Most haven't been caretakers, don't have that nurturing mothering instinct that women seem to have, and have not been periodically assaulted by their bodies with normal occurrences like pregnancy and menstruation.
I was a woman like Elizabeth Edwards - a professional woman who had managed a career and family, with a good income and personal health. I ran and played tennis and did sit-ups with my toddler sitting on my belly. I hiked with my baby in a Snuggly. That was my baseline when I was diagnosed with lupus at 35.
The diagnosis hit like a brick. I already knew that I was ill, because my ability to run and play tennis and even walk had been compromised and I was in pain daily. But the knowledge that I had a disease that wasn't going to go away...whole new ballgame. My dearly beloved didn't crack a book to learn about the diagnosis or what to expect, or to learn what living with chronic illness could be. That means the good and the bad were unknowns for him. I tried to put pamphlets and information in his hands, to no avail. Without a more objective guide, his perspective came from day to day changes and challenges.
Long story short, we were divorced within two years. Long sad story.
When your man leaves you before you get a chance to even adjust to the new circumstances, you are viewed with sympathy and pity, like Elizabeth Edwards in the vast public eye. She held it together and kept a wonderful dignity and calm-no public bashing of John, a wise acceptance of the fact that he would continue to be the father of her children and their caretaker after she was gone, and still a public presence that didn't give in to tragedy and hurt.
In my practice and in my life, I have seen the abandoned women often, and yet I can name only a few men in the same situation. Many, many times a man with chronic illness was accompanied by the woman in his life, who often knew more about his disease than he did. She was inevitably a positive force, helping with his care when necessary, picking up the financial slack by working harder or returning to the workforce, making a way for the children to continue a relationship with the sick parent. I do not fault these women; it is the way it should be, in my view. But the dichotomy sickens me. For someone to say "you are not the woman I married, you are weaker, less attractive, less able to give to me, less able to earn"-juvenile and sickening. And all too common. Makes me want to say "Suck it up, little boys, the world isn't your playground every day of your life. Grow a pair and hang in."
Sigh.
Peace. If you can.
Monday, December 6, 2010
Who Do You Talk To On A Bad Luck Day?
I was thinking about writing today, and I couldn't decide what to write about. In my mind was "Who do you tell when things are rough?" and "Look at my sweet baby heirlooms" and "Yay, my knees are so much better!", not to mention that this morning a friend got me started thinking about "Following Your Instincts", which has many ramifications for my life. I was a little distracted from my dilemma by the back and forth creeping of a huge truck, another delivery for the house that's being built two lots down from me. Suddenly BOOM. I ran to the door to see my mailbox laying on the ground and its pole (with the electrical light at the top) tilted 10 degrees to the left.
The young truck driver immediately came to my door, apologizing and calling his boss for me to talk with. We arranged repairs as I stood in the doorway in the 30 degree cold. The driver was sweet and apologetic. Still, I feel that awful "last straw" feeling.
It was not for nothing that I contemplated "Who do you tell when things are rough?" I've been worrying about money, my parents, my child, my health. It's been a time of very hard work and few victories. A few days ago I FINALLY had one of those wonderful days when I woke up and nothing was hurting, and I was hoping it might be a bit of a downhill stretch for a change. It was my first such day since before I broke my arm in July. A little hint of maybe some better health for a bit, a chance to build strength and improve my endurance.
One of my sisters caught up on my blog a couple of days ago. She remarked that she can never see my pain when she's with me, that I don't speak about it. Part of that is because I don't know who to tell. Or what it would help. My daughter tells me that she complains to me sometimes just because she needs to say it, and that she feels better after. I haven't had that person to "just say it" to for a long time.
I used to think that your romantic partner was the natural "just say it" person. I slowly learned that wasn't necessarily so. Sometimes that person doesn't understand their function as the supportive sounding board. They may feel less than useful, or bored, or galvanize into action to solve your problems for you. At worst, they may use your downloading of problems or fears against you. I once made a long-term partner a confidante (as he seemed to make me his) only to find that he was making a long catalog of my discussions to justify calling me mentally ill.
Anyway, just this moment, I am sitting on the couch with my cauliflower and brown rice, making this neat little entry to document that today is a rough day, and that I am working hard to make more good days but I could use some luck. Just a little luck. And I would do anything to have my one sure-thing person back to talk it over with. I miss you Lorri.
The young truck driver immediately came to my door, apologizing and calling his boss for me to talk with. We arranged repairs as I stood in the doorway in the 30 degree cold. The driver was sweet and apologetic. Still, I feel that awful "last straw" feeling.
It was not for nothing that I contemplated "Who do you tell when things are rough?" I've been worrying about money, my parents, my child, my health. It's been a time of very hard work and few victories. A few days ago I FINALLY had one of those wonderful days when I woke up and nothing was hurting, and I was hoping it might be a bit of a downhill stretch for a change. It was my first such day since before I broke my arm in July. A little hint of maybe some better health for a bit, a chance to build strength and improve my endurance.
One of my sisters caught up on my blog a couple of days ago. She remarked that she can never see my pain when she's with me, that I don't speak about it. Part of that is because I don't know who to tell. Or what it would help. My daughter tells me that she complains to me sometimes just because she needs to say it, and that she feels better after. I haven't had that person to "just say it" to for a long time.
I used to think that your romantic partner was the natural "just say it" person. I slowly learned that wasn't necessarily so. Sometimes that person doesn't understand their function as the supportive sounding board. They may feel less than useful, or bored, or galvanize into action to solve your problems for you. At worst, they may use your downloading of problems or fears against you. I once made a long-term partner a confidante (as he seemed to make me his) only to find that he was making a long catalog of my discussions to justify calling me mentally ill.
Anyway, just this moment, I am sitting on the couch with my cauliflower and brown rice, making this neat little entry to document that today is a rough day, and that I am working hard to make more good days but I could use some luck. Just a little luck. And I would do anything to have my one sure-thing person back to talk it over with. I miss you Lorri.
Friday, November 19, 2010
The Busy Season and the Bad, Bad Knees
A few minutes ago, I picked up the beret I was knitting and stitched my way about one-fourth of a round. Suddenly I realized that my cables had disappeared. I had turned over the hat and stitched on the wrong side. I took out the errant stitches and decided it was time for a break. I've been knitting furiously for days. Yesterday I finished an earflap cap in organic cotton, then immediately started a bright beret in Noro Silk Garden and Silk Garden Lite. When I finished the beret, I wanted to line up work for today, and I grabbed a ball of Kureyon and began the band for another beret.
That's the pace I've been keeping. This is my busy season and I want to have plenty of beautiful pieces on my table at the Market and in my Etsy store, as well as my custom pieces for Larues. It makes my heart swell to see a piece turn out better than I imagined, and I've vowed to only produce things that I love. Unfortunately, if I keep running my body like a machine, I'll end up with tendinitis and have to take a prolonged rest instead of this morning break.
Last night I struggled with my plans for the remainder of the season. I had hoped to sell at the Market weekly until the middle of December, but the first two weekends wore me down a good bit and pointed out the severe difficulty with my arthritic knees. I've written a good many "doctor notes" advising people to stop activities that are not good for their conditions, but I can't afford to have one for myself right now. I can only pay my bills if I add handiwork to Social Security. I'll have to keep working on opportunities to sell my work that don't involve lugging many pounds of heavy equipment, loading it in and out of my car, setting up and taking down my equipment and products and the long hours in the booth doing customer service (my favorite part of market sales).
With this disease, I find myself compromising at times. Take the knees. For more than a month I've endured the severe pain and difficulty standing and walking. I didn't want them injected with steroids because I know the effect it has on my metabolism and weight. Finally, last week I gave in and started a hefty steroid taper, taking my prednisone up to 40 mg daily and gradually bringing it down over two weeks. If I had been in town I could have gone to my rheumatologist for intraarticular injections, but I was out of town and had to settle for increasing steroids orally. My knees are better and I'm not hollering when I stand up. It makes me much better company. The compromise is in dealing with side effects. Makes me want to growl.
Today is lesson day. The two young girls that I am teaching will be over after school. It's good incentive for me to do some picking up. I can get so focused on work that my home (which is my workplace) is neglected. My Hoover could use a bit of work.
Today I'm writing about such ordinary stuff that I wonder why it should be here. My life is ordinary with the usual hassles that affect everyone. They don't go away because I have lupus or because I'm neck-deep in a new creative venture. Sometimes I'd like to daydream them away. Hah.
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.
Sunday, November 14, 2010
Turtlefat Collection Goes Retail and I Can Write Again
The only thing that could keep me from blogging for almost two months is the need to keep a secret. Finally I can reveal what made me keep silent! Only a couple of people knew that my handknits were being considered for retail sale in a lovely Minneapolis boutique. Last week, Larues officially gave me my first order! I am thrilled beyond belief. I never thought my hats and gloves would find their way to a sweet, fashionable, modern store like Larues! My baby sister lives in Minneapolis and shops there, and she thought we'd be a good match, so she asked me to send her some samples to take in. Thanks, Dot!
Meanwhile, I had to get back into the swing of the Chattanooga Market, so I've had three days of great sales and fun there. With a limited display I can do setup and breakdown alone. I will have to endure whatever weather we have for the next few weeks, but this year the Market will have two weekends of preChristmas sales at an indoor venue! I'm going to be at Warehouse Row on the 10th and 11th of December, and again on the 17th and 18th. Hurray for working warm.
I hate to mention health right now. I am really feeling my weight. My knees hurt terribly with any walking or standing, and even sometimes when there's no weight on them. My fracture is healed by x-ray, but I still have a good bit of work to get my full motion and strength back in the right arm. I am having digestive problems and hoping it doesn't herald another episode of colitis. I've been free of it for years, and it has only occurred rarely, so I can't remember if indigestion and stomach pain preceded it before. I just remember having bloody bowel movements. I'm not anxious to have another colonoscopy but if it recurs I certainly will.
I've been looking into surgical weight loss procedures. I think I've exhausted my alternatives. I can't make my body handle the prednisone any better. I'm not making headway using a very sensible, reduced calorie diet. My exercise options have shrunk drastically. I'm ready to start seeing surgeons. (The time is now...did the Walrus say that because she had a big belly, too?)
The good good news is that I am inundated with design ideas. They are in my head multiplying all the time. I'm excited by color and texture to a ridiculous degree - a gorgeous hank of hand-dyed yarn can make me tear up. I showed some of my recent favorites. The hot pink with navy accents is Colinette Jitterbug sock yarn. The flowers are crochet. The blue/gray/tan beret is knit with Noro Silk Garden, one of my all-time favorite yarns. The combination of silk, mohair and a touch of wool always feels great to me, and I admire Noro for his perpetual production of organic yarns using innovative, ecofriendly processes. The tan scarf with the ruffled edge is organic cotton. I've had enough people tell me they don't tolerate animal fibers to convince me that it is worth making some winter hats and scarves from the bulkier, thick organic cottons like this Blue Sky undyed. The scarf pin is a hand-dyed polished wood from one of my favorite Etsy stores, South 4th. I've used a number of his beautiful pins and buttons. Just running my fingers over them is soothing.
Enough! I am running over with conversation because of my long absence. I can write more later.
Peace.
Saturday, September 18, 2010
On Pain and Medication
Today discovered Dana Jennings, who blogs with great insight about his experiences with prostate cancer. I read one of his posts about pain, treating it with modern medication versus the stoic, sometimes misdirected handling of it in some ancestral communities. It brought me right to my current situation.
Two days ago I was overconfident about the recovery of my right arm. I carried something that was too heavy, and now I am paying for it. I've had two days of intense pain. I've medicated it enough to dull it and make me functional, but it underlies every thought and activity of the day. I've even put off my knitting group for a bit because I'm debating whether I can be social and not grumpy and distracted.
Pain has been an issue for me ever since lupus was diagnosed 18 years ago. In the early years (until about three years ago, I believe) I avoided pain medications. I would handle a day of pain by sitting quietly and doing some activity that took my mind off the pain. I would avoid using whatever joint or limb was hurting. I could effectively keep myself from dwelling on the pain, and everyone around me congratulated me for it. My psychiatrist said I should teach others how to do that. My rheumatologist laughed at the way a bottle of pain medicine that was written for a month would last for a year. I patted myself on the back for my extraordinary powers of self-control. After all, I had worked in methadone clinics and seen the pitiful souls who allowed themselves to become addicted to prescription pain medicine. I was not going to wind up like that.
What nobody saw, including me, was that I so severely restricted myself from using pain medications that I also limited my function and fitness. No one advised me that I should take enough medicine to get off my couch and be more active. No one related my persistent weight gain to that lack of activity and avoidance of pain. In the end, I didn't become addicted, I just became a sedentary lump.
My medical background did me a disservice. I was intent on taking medications that cured or helped my disease, and avoiding those that just provided comfort. If a medicine didn't decrease the immune response or stop inflammation or make nerve cells work better, it wasn't worthy of my use. I underestimated the importance of treating the pain that attended my condition. In the end, that wasn't good medicine. It contributed to weight gain, osteoporosis, fatigue and depression. It left me less able to care for myself and be independent. It was this that finally opened my eyes and made me more responsible about treating my whole being, and not just the disease.
These days I take my pain medicine thankfully, grateful to the researchers who developed ways to keep us functioning despite the pain, happy that I don't have to use so much energy enduring and ignoring this discomfort. My life is fuller, more productive, and I am more useful to myself and others.
Peace.
Two days ago I was overconfident about the recovery of my right arm. I carried something that was too heavy, and now I am paying for it. I've had two days of intense pain. I've medicated it enough to dull it and make me functional, but it underlies every thought and activity of the day. I've even put off my knitting group for a bit because I'm debating whether I can be social and not grumpy and distracted.
Pain has been an issue for me ever since lupus was diagnosed 18 years ago. In the early years (until about three years ago, I believe) I avoided pain medications. I would handle a day of pain by sitting quietly and doing some activity that took my mind off the pain. I would avoid using whatever joint or limb was hurting. I could effectively keep myself from dwelling on the pain, and everyone around me congratulated me for it. My psychiatrist said I should teach others how to do that. My rheumatologist laughed at the way a bottle of pain medicine that was written for a month would last for a year. I patted myself on the back for my extraordinary powers of self-control. After all, I had worked in methadone clinics and seen the pitiful souls who allowed themselves to become addicted to prescription pain medicine. I was not going to wind up like that.
What nobody saw, including me, was that I so severely restricted myself from using pain medications that I also limited my function and fitness. No one advised me that I should take enough medicine to get off my couch and be more active. No one related my persistent weight gain to that lack of activity and avoidance of pain. In the end, I didn't become addicted, I just became a sedentary lump.
My medical background did me a disservice. I was intent on taking medications that cured or helped my disease, and avoiding those that just provided comfort. If a medicine didn't decrease the immune response or stop inflammation or make nerve cells work better, it wasn't worthy of my use. I underestimated the importance of treating the pain that attended my condition. In the end, that wasn't good medicine. It contributed to weight gain, osteoporosis, fatigue and depression. It left me less able to care for myself and be independent. It was this that finally opened my eyes and made me more responsible about treating my whole being, and not just the disease.
These days I take my pain medicine thankfully, grateful to the researchers who developed ways to keep us functioning despite the pain, happy that I don't have to use so much energy enduring and ignoring this discomfort. My life is fuller, more productive, and I am more useful to myself and others.
Peace.
Sunday, September 12, 2010
Free Hat Pattern: Rolled-Brim Bulky Hat
Holy Cow! I'm here for the third time in a week. Who died and left me Blog Queen? I don't know. Maybe I'm just discovering once again that making this download of emotions and reporting my activities more faithfully increases my sense of well-being.
Anyway, today I made a perfect hat by accident and I decided to share it. Sometimes a yarn says "Try this." I've learned not to ignore those pleas. When I sat down next to a ball of Point 5 this morning, it was begging to be a hat. Not a structured, carefully shaped hat, just a simple pull-on hat with absolutely no embellishment in the way of stitch-work, cabling or ribbing. As always, my patterns are copy-righted, so feel free to use them for personal use or gifts, but please do not reproduce the pattern or the product for sale.
SIMPLE BULKY ROLLED-BRIM HAT
Yarn: Colinette Point 5, 1 hank
Supplies: Size 10 needles for working in the round; yarn needle to weave ends
This simple hat is a one-day project. It is knit completely in stockinette stitch in the round and the beauty of the yarn is all the adornment needed. It is highly customizable. You could add a knitted bow or flower on one side, attach long braided ties over each ear, or change the rolled brim to a fitted, ribbed one. For a whimsical change, you could add tassels to the top, or knit ears and attach them. It is an easy, quick, multi-purpose hat pattern.
Finished size: 20 inches (51 cm) circumference.
Gauge: The thick and thin nature of the yarn makes gauge difficult to assess. To be more accurate, you should measure at least three times in different places on your swatch and take an average. Be sure not to miss the smaller stitches in the thinnest strands of yarn when you count. 11 stitches = 5 inches.
Cast on 42 stitches. Join to work in round.
Knit every row loosely until piece measures 7 inches long.
Decrease rounds
Round 1: *Knit 7 K2tog repeat from * to end of round.
Round 2: Knit.
Round 3: *Knit 6 K2tog repeat from * to end of round.
Round 4: Knit.
Round 5: *Knit 5 K2tog repeat from * to end of round.
Round 6: *Knit 4 K2tog repeat from * to end of round.
Round 7: *Knit 3 K2tog repeat from * to end of round.
Round 8: *Knit 1 K2tog repeat from * to end of round.
Round 9: K2tog repeat to end of round.
Cut yarn, thread through remaining stitches, pull tight to close hole. Weave ends.
Enjoy!Peace.
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