Infusion Center Fun

I'm risking a shipload of karma by talking about a funky afternoon at the infusion unit. Any talk of being in the company of cancer patients and receiving a $13,000 drug with the support of a special grant is generally made in a reverential tone. One should be grateful for life, the field of medicine, and the brick and mortar of the local teaching hospital and all its minions. Nevertheless, there are times when the bumpy, un-pretty operation of the whole process exceeds the mandate to remain gracefully silent.

I screwed up my schedule. I'm admitting that up front. The last time I went for treatment, there was a snowstorm, or what passes for one in Chattanooga, Tennessee. After a traumatic afternoon of making a 15-minute trip in two hours, complete with walking in the snow (make that slipping and sliding and falling in the snow) and dragging my disc disease-ridden lower spine up a steep hill by will alone, I lost my appointment card. Going on memory, I planned for the wrong day, and the right day had passed before I called to check and was told to come in Friday, the 28th. 

The infusion center, home of cancer patients, hemophiliacs, chronic anemics, and a few auto-immune folk like me, was packed. There was no treatment recliner for me (universe forbid one take their treatment in a regular chair), so I sat on a narrow bench in the hall waiting for a free space. When I was called back and planted in a comfortable recliner, I thought my problems were over. My neighbors were a young Filipino women, sleeping under her hoodie, and and an empty chair. A nurse deftly inserted my IV and I settled in to knit and wait for my medication to be delivered from the pharmacy. The empty chair was soon occupied by a dreadfully thin, very ill-appearing man with one leg amputated. He was accompanied by an equally thin, fidgety woman who constantly asked how he felt and made frequent trips to the nurses station to request various drugs for his comfort. She never removed her sunglasses. 

The Filipino girl was rudely awakened by her companion, an even younger girl (sister?) who yanked on her hood and shoved a phone in her ear. They spent much of the remaining time making calls, giggling and sharing the phone, evidently feeling that their noisiness was of no consequence if we couldn't understand their language. 

In the interim, the chairs across from me came alive with an older man and woman informing each other about their lengthy illnesses and the trips they took between transfusion therapies. They were on the other side of the room, but I heard every detail about their years-long illnesses and began to contemplate pulling the curtain around my chair to pretend to solitude. Eventually the older woman finished "this mess", as she called her five times a month precious blood transfusions, and left. The man proceeded to fall asleep and snore loudly. With the first snore, the Filipino girls and I stifled laughs and looked at one another with complicity. After he cranked up to louder snores, he began to gargle, adding that liquid, bubbly component to the noise-quite an accomplished snorer he. A sudden crescendo produced audible laughing among us, prompting his wife to turn around humorlessly to find out who dared respond to her dear one's performance.

The skinny man next to me began to mutter about wanting to "puke", and I silently begged him to control that urge, as that activity is my perfect prompt for sympathetic vomiting. There was frantic activity on the part of his woman, who had by then called the doctor's office herself to ask for drugs. Her conversation with the nurses over who called when and what to expect took ten minutes. I beat a retreat to the bathroom in the hall, pushing all my hardware with me, and hoping I could stretch the walk until his problem was resolved. As I sat in the bathroom my infusion monitor beeped "complete" and I breathed a sigh of relief.

I took the slow, winding back way home, happy in my solitude, finally able to laugh over the nutty, chaotic afternoon experience.

The little guy pictured is my version of Piplup. Cuter than chemo.

Peace.

Weathering the Flare II

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

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

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

Peace.

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.

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 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.

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.

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.

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!

Retreat, Regroup and Return

I have found a limit today. Evidently, four weeks of forced helplessness and pain is my limit. I didn't know it when I woke, but suddenly I am ready to turn off my phone, tell people to leave me alone, get rid of the extra tabs in my browser, and cry when I can't find a measuring cup. I've had it. It's so bad that I am here on my computer, typing with my arm in an uncomfortable position, making pounding noises on the keys that I haven't produced in four weeks.

I am usually a social person, happy to hear from everyone (except the people I hate, who are few) and quick to find some energy for communicating. My patience is gone. Every time my phone goes "beep beep beep beep" to indicate a new text message, I startle and then curse loudly. In my mind, there are legions of torturers out there who are trying to distract me and put me to extra effort pushing buttons and answering inane messages. The Terminix man appearing at my door and saying "good morning" is only there to force me out of my chair and across the room, letting heat into my house as he lounges in my air conditioned foyer. I have one (ONE!) chore to do on my computer and I'm angry at the friend who hasn't called with the information that I need to complete it.

In a minute I'm going to cuss someone out on the intercom, grab two beers and take the chute route from my plane. I will do the ultimate "take this life and shove it". It doesn't matter that this whole thing is my fault. I packed yarn in a space bag. I left a space bag next to the door of my bedroom. I walked across the room without looking at the floor. No wait, it goes back way further. I ignored my family history and past symptoms and chose a stressful career that would certainly make me a setup for an autoimmune disorder. I took extra prednisone so that I could keep working (and playing) longer, destroying my bones and increasing my weight. I produced a body that would almost certainly break when challenged.

Okay, you can see where this is going, right? Pretty soon I will be convinced that I produced the all the bad stuff in the world, including climate change and political conservatism. I am on a downward spiral that will leave me huddled in my recliner watching Fox News and the Lifetime network. Self-pity, anxiety and self-indulgence, you are my friends.

Fortunately the last ring of my phone occurred just after the third paragraph and a friend reminded me to "retreat, regroup and return". Just the right coaching for today. Any other advice would have been too religious or too complicated, just the things to make me angry instead of contemplative and calm. For once, I'm going to listen to outside help instead of knitting furiously until my mind is numb and my body hurts more.

Peace.

Training and Dating and Training

"...if you make your resident look bad, she'll torture you until you beg for your mama." Dr. Bailey, surgery resident, season I Grey's Anatomy. Or maybe she'll ask you out.

No matter how much they teach housestaff about boundaries and professionalism, the sad fact remains that-during your residency days-if you don't date someone from the hospital, you have little chance of dating at all. The hallowed, horny halls of Seattle Grace Hospital on Grey's Anatomy are full of resident-attending relationships. That's a pretty sticky pairing, and I only saw one during my three years of internal medicine at Johns Hopkins Hospital. What was much more common was dating between fellow residents, residents and students, house staff and nurses, house staff and other hospital staff...you get the idea. After all, the hospital was full of reasonably educated, young, single-ish people, all conveniently under one roof.

We did occasionally make the effort to diversify our selection pool. Once in a blue moon I would go out to a club with one or two fellow residents and meet some of the local fare. We usually lied about our occupations and claimed to sell shoes at a department store, mindful that many folks had misconceptions about medical residents. Some guys automatically avoided us, expecting a superior attitude and surfeit of brainy wisdom. Others heard "doctor" and expected hefty incomes instead of the meager stipends we were paid. My forays into the real world were never productive. I would drink, dance, have fun with my girls, and go home alone.

So yes, I dated as others did. It was the early '80s, no one was on line, there was no Sunday afternoon speed dating, and the hospital was full of men. Men in hospital world were judged much like men on the outside. We evaluated looks, intelligence (yes, there was some variation-a smart monkey can memorize a good chunk of medical school curriculum), origins, and whether our call schedules matched. We considered whether this was a man that would push to spend the night but forget our name during lunch in the cafeteria or rounds on the ward. Most importantly, did he have any life going on besides the lengthy to-do list of daily patient care. None of us had time for big activities, but we could read, see a movie, talk about hobbies...

Once I developed a friendship with a student and we wound up dating for months. One thing that was perversely in his favor was his ability to understand that only a portion of our internal medicine teaching would help him in his future specialty. Once our offerings crossed that line, he politely excused himself to work on improving in his own specialty or having a healthy life. I was appalled that he didn't want to stay up all night watching a new onset diabetic receive hourly shots of insulin, but he wisely chose to get some sleep. A nice corollary to this behavior was his refusal to memorize medical trivia just to suck up to the attending physician. I've never liked a show-off.

]Peace.

A Broken Arm?!

this is not about the punctuation or the caps. it is all i can do to use my right hand to help type here. eight days ago i slipped in my own room and fell, producing a right proximal humerus fracture that is now in control of my life.

i tried to think how to talk about this ongoing episode. descriptions of pain are always inadequate and quickly become boring, so let's just make pain a given and move on. there are all kinds of sequelae (consequences we say in the real nonmedical world) that i would like to relate.

this fracture - my right arm, up by the shoulder, resulted from a fall. in my house, i slipped and fell. i sprained my foot at that time, so i had a getting-off-the-floor dilemma. after the paramedics came and the biggest one told me he could bear-hug me and lift me up, we tried. i screamed and we quit that trial. i scooted over to a chair while holding my arm, wrenched my good foot and bad foot into position, and stood up. you do what you have to do.

who knew a fracture made you sick? the first few days i felt feverish and tired. yesterday i went out for the first time, and i slept deeply for hours after. i have been fortunate to not dive into a lupus flare. i have been hungry, i suppose for the extra nutrition required to heal.

when you are hungry and your main hand doesn't work, it is good to have friends. my friends have come to my home with amazing, tasty, fresh cooking. lentil and oatmeal loaf, minestrone full of home grown vegetables, tiny strips of collards stir-fried with fresh okra, whole wheat biscuits and tortillas...grow some bones with that! with a little help i've stirred some pots too, making one loaf of banana bread and a corn/tofu/cornbread mix casserole.

i can knit a little and finished a baby blanket order today. that makes me happier than sunshine. i am on my way to recovery.

Knitting with Arthritis

That title is about the mechanics of how I knit, as well as the plan to use knitting for my life with lupus. I know, with me it's never just one thing. Can't help it, that's what the brain does - leading me here and there, tying together things that I find along the way.

This week the wonderful hat anthology that Annie Modesitt put together is being released. 1000 Fabulous Knit Hats is exactly what it sounds like, with gorgeous photos of hats knitted by scores of knitters, and ten special hats that were chosen as the best original designs. The patterns for those ten are included. Eleven of my hats are included. They are scattered through the book but can be found in the Contributors index, where I found my name under "W" for Woods Bruell. I don't think Daddy understands the significance of my persistence with my maiden name - his name - but it means a lot to me. I was stunned to see a detail from one of my hats on the Introduction page. It was such a tangible proof of my involvement there. I will probably have palpitations when the books actually arrive. You can see them here on Amazon.com, where there is a hefty discount.

I hope the book sells a million copies. The editor, Annie Modesitt, is a legend in knitting circles. She is an innovator , teacher, designer and writer. It takes big work to share your thoughts and designs in the huge way that she has. Her combination knitting techniques have revolutionized knitting for many of us. On a personal note, I would not be pursuing this second career without it, as those innovations have made it possible for me to knit well and endure longer knitting sessions, even with my painful arthritis. Annie has recently come to understand the endurance barrier herself, as she has dealt with severe symptoms of fibromyalgia. She writes honestly in her blog about everything in her life, including her husband's ordeals with cancer, her travels, and her feelings about her own new illness. She is deserving of every success.

I don't profit from the 1000 Hats book. It's just one way of showcasing what I love. I always enjoyed tangible proof of my work. Seeing a patient make progress, getting an education certificate, signing the payroll checks in my office - I had those in medicine. Now it's the printed pattern from Cherry Tree Hill Yarns, the calls for my custom work, counting the till at the end of a good market day. A long time ago I considered a research career. At the end of my Hopkins training I accepted a fellowship at the University of California San Francisco. For all the wrong reasons ("love") I decided to come home and continue in clinical primary care medicine. The outcome was fortuitous - instead of spending countless hours in a lab, putting tubes in the throats of lab rats, I started my family and my medical practice. I was infinitely better suited for the latter. The wonder of watching my child grow up, and the day to day satisfaction of working with people in a field that required creativity and constant change was satisfying in a way that research couldn't match.

Right now I have two custom projects under way, with a third waiting in the wings. I'm having to use all that I know about knitting with arthritis in order to run this stretch. In addition to combination knitting, which allows me to form stitches without undo twisting and turning of my needles, I have placed every project on circular needles, which keeps the weight of the growing fabric resting on my lap. When I discovered that one project was a third wider than necessary, I took off the 4 inches of work and began again. I figure this saved me at least 6 hours of extra knitting, even though I had pangs over the work I lost. I am using smaller needles than necessary on one project in order to maintain the gauge I want without having to knit very tightly. Knitting looser keeps a lot of strain off my fingers. It is especially helpful when there are intricate stitches like twists, cables, and even knitting two stitches together. That little bit of extra room to maneuver makes a huge difference. I discovered that one of my twists had moved over a stitch, and (GASP) I left it there. It was only visible to the closest inspection of a discerning knitter eye, and I didn't feel the need to undo many hours of knitting to fix it. Sometimes perfection is not the perfect option. I take frequent breaks, massage my hands, stretch, and get up from my chair. Arthritis involves more than just my hands, and my knees and hips and feet need a break, too. I keep water on my side table and take frequent drinks. It's easy to neglect hydration when you get involved in a project. My sketch book is also on the table so I can transfer those random ideas quickly as they occur to me. A few days ago, I had an idea for a sock pattern. I wouldn't believe it if I hadn't put it directly into the book-I really don't do socks. Anyway, knowing that I don't miss any ideas keeps me from being anxious and tense while I'm knitting.

Peace.

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.

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.

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.

Almost Too Tired to Knit

When I awakened today nothing hurt. Right now, the hurt is not the point. That's not the hallmark of my flares. I've been noting flare symptoms for a few weeks, and denying them to myself, but the lupus has pulled out the heavy guns. I am tired. It's difficult to explain the fatigue from this disease. I am incredibly tired, sometimes suddenly, and without the ability to override it. Today I sat on my bed and played Scrabble on the computer for a couple hours, and sat and watched old Law and Order episodes for a few more. I did very little knitting. I was kind of limp and bleh and it seemed like it would take superhuman strength to lift my needles. This afternoon I tried to jumpstart my energy organ (which is that? spleen? thymus? appendix?) by drinking a cup of coffee and taking a second Rhodiola rosea. It worked enough for me to fix a simple dinner (scrambled eggs) and read a few articles. Now I think I can knit. I'm not going to be like this for long. Treatment is scheduled before the end of the month.

At some point this evening my television viewing changed from Law and Order to Bones. I watched several episodes before the eggs and another during. Neither brain nor stomach grumbled about the viewing of numerous scenes of "gross" anatomy. Guess I have a serious case of doctor brain. You don't want to know.
Peace.

Happy New Year, Lorri

Last day of the year. I was zooming along with my designated morning errands when Clara Parks of Knitter's Review put a roadblock in my path. She asked a new question in the KR forum - "what knitterly things make you particularly grateful...?" As I answered, I realized that the top of my list was the contact with people who share my love of knitting. I belong to two Etsy teams, two on-line forums, and a local knitting group that meets weekly. I correspond with a number of enthusiasts, some of whom raise sheep and provide supplies, others who are consumers like me. I thrive on this contact, and concidering it made me think of my best friend ever in this life, Lorri.

I met Lorri on the escalator in the main classroom building of Jefferson Medical College. We were freshman medical students, nearing the end of the year. Our class of 220 only had about 40 female students, but we hadn't officially met until that time. We were discussing the student talent show, which had featured some skits that were degrading and insulting to women. It was 1979 and I had found my first truly feminist friend.

Becoming close friends with Lorri taught me the wonderful difference in having female friends. We shared a number of interests, as well as many political and social views. In every situation, we had each other's backs. We taught and learned together, shared experiences, and planned our lives. Once Lorri was diagnosed with a brain tumor and I with lupus, we even contemplated our deaths.

Lorri died 14 years ago, just before computers became an integral part of personal life. We never exchanged email. She never joined an on-line discussion group or looked up patterns for a craft. I found myself mulling over that fact this morning, knowing that she would have rejoiced with the open sharing and international contacts produced by this new world of communication. Once again I feel the need to live my life better, appreciate this world more fully, make up for the absence of one who cannot participate because of leaving us prematurely.

Happy New Year, Lorri. Peace to us all.

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.

On a Healthy Note...

I am not sick. I felt like a flare was creeping up on me last week, but most of those symptoms have lessened. I still feel some weariness, but I truly believe it is appropriate, born of recent activities. Last week, with tendinitis creeping in, I officially went on holiday. I put off knitting orders and let my needles have a good daily nap. I put away crochet hooks completely. I've minded my posture, rubbed with Aspercreme, and propped my feet up.

In spite of these alterations, I'm still enjoying holiday activities. We cleaned out the Pod to prepare it for pickup, and emptied the boxes that were cluttering the living room. Suddenly it seems ready for our little forest of fake trees that takes up about two square feet of table space. We can turn on the lights, invite our friends, and be in the season. Christmas gifts are bundled in shopping bags, waiting for wrapping and delivery. Um, yes, that includes the ones for sisters in far cities. I've given lots of thought to what each person wants and needs, and how that fits my budget. In spite of far greater financial constraints, I find shopping was fun and I'm happy with my finds.

My holiday shopping never reaches the big mall. I began at the Chattanooga Market, took a turn through a sale that three artists had in a home, and pulled up some favorite places on the Internet. Of course my on line course included Etsy. I even did some shopping in my own store inventory. I was happy to use my needles to produce a few custom pieces, including the hat that my sister requested. One of my sisters (we all know who she is, but I can't say it here!) has a big head and lots of allergies. I made her measure the circumference of her head after she kept claiming that all the hats she tried were too tight. 24 inches! That's 2 inches larger than the average adult! I hope she donates her brain to science, or maybe I could just get a look at an MRI...I digress. The only fibers she is comfortable with are natural, non-animal fibers. You can see her hat and mitts: they are organic cotton, a very soft, thick and thin, undyed one with the vibrant red organic cotton from Blue Sky. The hat fits loosely at the top, kind of slouchy and cool. I'm finishing the second mitt now. My daughter has tried on the mitts a dozen times. I feel a request coming.

I'm getting some special cooking in. Made a 7-Up pound cake two weeks ago, some shortbread last night. I'm the designated turkey chef for Friday, and I'm planning a few other goodies.

Overall, you can see that I am not sick. Clearly I will not allow myself to be. There are fun things to do and I'm going to do them all. Not to mention the daily ride on the exercise bike - not fun before, but definitely great to look back on.

Peace.

The Flare That Won't Materialize if I Refuse to See It

I started my last post "Today was marvelous." I wrote one paragraph, then accidentally made it disappear. That's probably a fated ending. As I wrote, I realized that I was describing a day that was good, a day in which I accomplished a lot, but not a marvelous day. I worked hard with my daughter this afternoon. We brought all my Market supplies and products in from her car. Then we unloaded piles of things from the Pod. It felt good to know that we only need one more session to empty that giant box completely. I'd like to have it out of my driveway by Christmas.

While I performed all the physical work, I didn't feel the endurance and strength that I built up through the fall. Every lift and carry was hard. I was out of breath quickly. I didn't worry, because I know from my recent stress test that my heart is fine. I just felt a little discouraged, as though I've been working so hard and still don't see much in the way of sustained results. Later I stared in the mirror as I brushed my teeth, and noticed that my lupus rash is bright pink. I've been feeling the warmth in my cheeks for a couple of days, resting my hand there without the meaning of it really registering. When it sunk in this evening that I may be starting to flare, a familiar feeling of dread washed over me.

I understand why denial is such a powerful coping tool. It allows you to function without constantly fearing the inevitable--no, let's say the probable. I've pushed the mounting symptoms aside as far as I could, even the mild symptoms of colitis that showed themselves this week. Denial kept me from anticipating a flare or dreading a flare, or even acknowledging that my symptoms indicated a flare. Now that it is beyond obvious, I will call the oncology office and see when I'm scheduled to be treated. Maybe we can head this off without much fuss.

Still and all, this day and the one before it have had some of the properties of marvelous. I've been with my daughter and my newest adopted child. We went to an artists' sale yesterday, made small purchases, talked to people, ate fabulous snacks. I cooked. I knitted, coming close to the end of a very large toddler blanket that I'm making for a custom order. It is Knitpicks Crayon, very fluffy and soft with two strands drawn together. (See the pink and black above.) I began a pink and purple afghan from Southwest Trading Company's Bold, that expensive cotton cable yarn which I stashed when I found a sale.

Not only do I have yarn organized on shelves, I have art work on my walls. This place is feeling more and more like home. We've worked a simple system. We bring in a large load of stuff, put it away or organize it for donation, then we bring in another load. Gradually it is shaping up. One difference in this house is that my daughter is amenable to putting more of her own work out for us to enjoy and others to see. With fewer square feet of display space, they will take the place of family photos and art that I was not wholeheartedly supporting. Our collection will get better.

I failed to mention that I have stopped using my exercise bike for a clothes rack and book shelf and have been riding it. Ten minutes today. I was reading Dakota by Martha Grimes as I rode. It's a testament to her amazing writing that I didn't realize the time had passed. I've read all her Richard Jury mysteries and several of her other novels. Thankfully, I can look forward to a few more.

My Christmas shopping is finished. If you see me in a store, slap me silly.

Peace.