Essiewb’s Weblog

There’s an entity in lupus that my friend Ginny calls a rib attack.  That’s when the inflammation seems to pick a spot in your ribcage, front or back, and cause intense pain that defies position change and moderate pain meds.  I have that right now.  I’ve taken what I can take and talked to God out loud all day.  Knitting is part of the distraction.  I’m working on Christine’s blanket.  I finished the first strip a few months ago.  Today I finished the pale pink block and started the light blue.  The knitting is good.  One stitch at a time, just concentrating on the one stitch.  Dayna took photos for me today.  Later I’ll show closeups. 

Peace.

Yesterday I joined a new group:  We Are Lupus, at www.wearelupus.org.  It is made up of a few hundred people, mostly lupus patients, but also patients with some related disorders, and family members and friends of patients.   It promises to be a good forum.  It’s always good to have the company and wisdom of other people who share your experience.  I’m not really a support group person.  I don’t want to put it in my schedule, and I don’t want my local friendship base to be built around a disease, but I do like having folks to talk to online.  Lupus can be very isolating (like many chronic illnesses), and the online connection is invaluable.

Seeing so many people with their descriptions of illness and treatment made me interested in reviewing my treatment philosophy regarding lupus.  Here goes!

First, do no harm.  Straight from the Hippocratic Oath that we all take when we graduate from medical school, these words should underlie the therapy for every illness.  Unfortunately, all treatments-herbal, behavioural, surgical, prescribed medicines-have possible side effects and undesired consequences.  That means we have to keep in mind the balance between possible bad effects and the potential for doing good, and also (less frequently considered), the balance between possible bad effects and the consequences of not treating at all. 

In lupus, there’s rarely a situation where not treating at all is acceptable.  Lupus is a disease where the body’s immune system sets up powerful inflammatory responses against our own tissues.  Inflammation has consequences.  The short-term consequences are pain, stiffness, swelling, fatigue-things all lupus patients are familiar with.  The long-term consequences are silent but deadlier-blood vessel damage and organ damage leading to strokes and heart attacks (the number one killers of lupus patients), kidney failure, liver failure, brain damage, and so on.

So, we can’t just leave it alone.  We need to treat.  How do we do that?

Use medications in stepwise fashion, giving time to see the results.  Most treatment begins with NSAIDS (non-steroidal anti-inflammatory drugs like naproxen, etodolac, and celecoxib.  If disease is more severe, the treatment may also include prednisone.  Other medications are added in a fairly orderly fashion.  With the exception of NSAIDs and prednisone, lupus medications take time to act, and the results of adding a medication may not be fully evident for anywhere from 2 to 10 weeks.  It takes patience, but overmedicating can be avoided by giving each additional medicine or dose change the time required. 

Use the least amount of corticosteroid medication that works.  At the beginning of treatment, corticosteroids like methylprednisolone and prednisone may seem like life-savers.  They work quickly, and large doses can turn a severely painful, highly active flare into a day at the park in short order.  Beware.  Corticosteroids have a myriad of short- and long-term effects that can be life-threatening by themselves:  stomach ulcers, osteoporosis, diabetes, increased severity of infections.  These are not drugs to play with.  You shouldn’t alter your dosage or restart a prescription on your own.  When your doc prescribes a taper, work with her/him.  They’re trying to minimize harm. 

Use steroid-sparing medications.  While much of lupus activity could be controlled by simply increasing corticosteroid doses (sometimes to outrageous levels), that isn’t acceptable.  Other medications may be added to your regimen simply to control the disease without using higher doses of steroids.  Ideally, one should be on no prednisone, but an amount of 7.5 to 10 mg per day is the most we generally feel is “okay” for chronic use. 

Concentrate on controlling the disease activity, not the pain.  Most pain in lupus comes from active inflammation, therefore you can decrease or eliminate pain by controlling the disease.  That means a focus on getting the disease under control is crucial.  You can treat pain all day long, and might feel well because you aren’t hurting, but underneath the disease is sizzling and doing its damage.  Getting rid of the flares of inflammation is extremely important.  When you don’t have the disease controlled, your pain medication usage can accelerate to higher and higher levels, adding medication dependency or addiction to your list of problems.  No one needs that.  That said…

Use enough pain medicine to function.  Nope, this is not a contradiction to my words above.  Everyone needs to be able to care for themselves as well as possible.  Using enough pain medication to run a marathon is excessive and ill-advised.  Taking enough pain medicine to allow you to dress yourself and cook a meal and be productive is reasonable.  Physicians have studied the best use of pain medicines, just like we study everything else.  When your doc tells you to put it on a schedule and prevent painful episodes, she/he knows what works.  Give it a try instead of being a pain medicine rebel. 

Use medicines that do double duty.  Depression is common in lupus.  As a matter of fact, lupus can cause all kinds of psychiatric syndromes.  If you have to take an antidepressant, consider that some of them will also decrease your awareness of pain.  That’s a good thing.  Let your doc know that you’re aware of this possibility, and discuss the options that are there for your individual case.  Serious thought should be made to getting that extra benefit.  Likewise, lupus can cause seizures, and some anti-seizure medications can also help with pain control-another double duty med possibility.  If your NSAID and prednisone cause swelling, and you have hypertension (a common combination in lupus), maybe your blood pressure can be treated with a diuretic (fluid pill) that will help both conditions. 

On the whole, you’re going to take lots of medicine for lupus.  Anything that lightens the load while serving the purpose is going to be welcome.

Don’t forget food benefits.  I’m a damn good doctor, well-trained by anybody’s standards (Vanderbilt University, Jefferson Medical College, Johns Hopkins Hospital).  Nevertheless, my nutrition training was minimal.  I’d call it “the pits” if I wasn’t afraid of being teased for using food puns.  (yeah, I’m funny!)  When I was diagnosed with lupus 16 years ago, I briefly skimmed the nutrition literature and saw some admonitions to avoid meat products.  That was it.  It took me ten more years to get seriously interested in more natural therapies for my illness.  By that time, the Integrative Medicine field had been advanced a great deal by the efforts of Dr. Andrew Weil and others.  Recommendations for eating with lupus now included a comprehensive plan for an “anti-inflammatory diet”, and for the use of helpful spices like ginger and tumeric, which reduce inflammation.  This plan does contain the old “avoid meat products” instruction that I saw so long ago, but there’s a lot more to it.  It’s not difficult, it’s good eating, and it’s wonderful to help yourself without taking another handful of pills. 

Don’t fall for solutions that are based on simplistic explanations.  Suppose you know that lupus is a disease of the immune system.  There are lots of products on the market that claim to help your immune system, for example, echinacea.  You might think that if it “helps” the immune system, it is good for your disease.  Not so.  Your immune system is already overactive, and it’s doing things that hurt your body.  It doesn’t need help.  It needs to be reined in.  This kind of thinking, without the knowledge of all the underlying factors, can cause you to make choices that hurt you.  Anything you think of taking or doing should be checked with your doctor. 

Don’t fall for unproved treatments.  There is an association of physicians (only a few hundred out of the hundreds of thousands of docs in the U.S.) that practices chelation.  They claim that you can give intravenous agents that will bind up the bad, inflammation-producing substances in lupus patients.  Nothing has ever proved this to be a viable treatment.  This isn’t the only scam out there.  If a rheumatologist doesn’t suggest it and approve it, don’t do it.

Treat the emotional stuff.  I have said it before and will say it many times more-antidepressants and therapy have saved my life.  Lupus is a tough disease.  It causes lifestyle change that would challenge a rabbi.  It can cause physical changes in your brain that affect your moods.  It requires medication therapy that can affect your brain and moods.  It is necessary and completely worth it to deal with this and treat it.  Sitting alone in your room, contemplating the end of the world and/or suicide, is not acceptable.  You need your best brain to fight this disease.

Never give up.  I made my first diagnosis of lupus in a 20 year-old girl that I treated in dermatology clinic as a resident.  That was 1985.  Four major classes of medications that are effective in treating lupus have been developed since then.  Every time I’ve worried that I was getting to the end of the treatment possibilities, something else has become available.  Research is a good thing.  It is saving lives in lupus, and we will all benefit from it. 

Peace.

This is the first bell pepper on the pepper plant.  It is about three inches long.  Two days ago it was the size of a thimble, but in the perfect pepper shape.  There are also several oblong jalapenos on it’s neighbor.  Chris tasted one and said it’s fiery.  My little rolling cart is in the background. 

These tomatoes are a very deep green at the top, lighter green underneath.  They are Carmels.  Can’t wait to see what the final product looks like.  I have literally dozens of green tomatoes on various plants now.  We’ve begun to eat them.  This is what heaven tastes like:  diced tomatoes and diced avocado with ginger dressing.  Dayna invented that salad.  Thank goodness they taught her to share in preschool.

 The last night of reunion, we had an impromptu talent show.  One niece is a bellydancer who has performed in many productions and she gave a performance full of subtlety and grace.  Some of her movements were the most delicate, flirty hip shakes, not the ferociously vigorous movements that you see in some styles of bellydance.  My dad was imitating her the next morning at breakfast, waving his hands in front of him and shaking his shoulders.  His version looked more like a hula.

This is my foot on the carpet at Cass Spa and Salon today.  Dayna and I went for haircuts and enjoyed our leisurely stay.  For some reason, they let me sit in the special lounge close to where Dayna was, instead of leaving me in the waiting room (which is also quite nice).  I couldn’t resist taking photos.  You can see I was wearing my classy Journeys sneakers.  Of course our haircuts were a success.  We look chic.  Mine is very short with a sassy shape.  Dayna looks like one of those hair models in Shear Genius, long layers and side-swept bangs. 

 Ignore the haircut on the woman  in this photo.  It’s the “before” version.  That’s me with my knitting nephew.  He requested that I teach him to knit a cap, so he was learning the two circulars method.  He had several inches on a cap when we left.  Prior to this, he could only knit scarves and blankets.  He made a nice piece of money from his classmates and friends over the past two years.  My second sister, his grandmother, taught him to knit.  He’s fast. 

The same nephew is also fast at speed Scrabble.  He whipped me badly most games.  Today I taught Chris to play.  I’m having a brief respite from humiliation while he learns the game and gets up to speed.  It’s kind of fun to play at a slower pace, where I can experiment with longer and more effective words and interesting arrangements.  Just as when I was learning, Dayna played as his partner, coaching and helping him get used to the less-structured, ever-changing matrix. 

Tomorrow I am going to be strong and my endurance will improve.  I must stand at the sink and blocking area and work on some completed knitting that just needs the finishing.  I hate being stalled at this spot, because no one else can do it besides me, and I am itching to see the end product.  Meanwhile, I’ve sat still and had my fevers (even at the salon) and knitted on blanket strips. 

Peace.

Whew.  I went for chemotherapy yesterday, and I’m a little slowed down.  Funny, I don’t know if it’s the drug itself, or the extended period of IV therapy, but I have big fatigue today.  I napped after I got home from the treatment, and walked slowly through Target later.  I didn’t feel like I was overdoing it, and I even slept extra-long last night. 

Today I’m tired and feverish, but unaccountably happy.  I sat on the floor in my craft room and cleared out another bin that was holding yarn cast-offs and sad pieces of unwanted knitting.  It’ll be another shipment to the prison knitting project, and it cleared a gigantic drawer-type bin to hold all my knitted baby and child stuff.  I was also able, with Chris’ help, to empty a giant box of old art supplies and projects.  I cleared out two bags and shoved the rest onto shelves, and that was another eight cubic feet of space in my craft room.  Inch by inch…

My happiness isn’t unaccountable.  I’m just so optimistic, after many moons of pseudo-optimism, and it’s kind of bursting out.  You could tell in previous posts, I’m sure, that there were times of being weary with this process.  I’ve been sick, well, sick, well….well…well…oh SICK for sixteen years, and the tedium of that inevitable cycle was making me growl.  The funny thing is, the short lesson we had in the class last week opened my eyes to the fact that my past optimism has been largely superficial, fooling everybody (even me) but not enabling me to live like I believed it.  It was evident in some of the habits I’ve picked up over these years.  Now that I see it, I can truly live with belief in my long life and good health to come.  I’m gonna be like my little old parents, old enough to be an aggravation.  Watch out, family!

Our recent reunion was the seventh, covering 13 years.  For me, the absolute best.  I’m the fifth of the six daughters, and my child is the youngest of the grandchildren at 20.  Our children are all adults, and it was evident that they are contributing to reunion and taking over some of the work of planning and presenting, and they do it well.  It is happening smoothly, without controversy or possessiveness, with the generations almost melting into a single continuous line of family members.  It is probably moreso with us than the average family, as there is a ten year gap between my older four sisters and us at the end, then only a six year gap before the first grandchild.  The grandchildren of my parents range from 20 to 44 years in age.  They merge with the great-grandchildren, who range from 2 to 20.  It makes an interesting dynamic, with most of us relating equally well to folks who are much older and much younger than us.

As we have grown to know one another better, we’ve become more accepting and tactful.  There is a grace to welcoming and including the young and old, achievement-oriented and struggling, sick and well.  This gentler spirit has been a long time coming in such an outspoken, opinionated family.  I am so proud of our advancement in this respect.  I love these people. 

I’ve been involved in the end stages of a project, one of those that I can’t talk about until it’s done.  I’ve really enjoyed it, almost hate to put down the yarn that I’m using because it has worked so well.  I took my bag of chemocaps into the office yesterday, labelling them while I sat there with my IV running.  I had time to crochet one more before I left.  The last two were crocheted from elann.com, cotton and a bit of elastic, in great colors with a nice tight twist to the yarn.  I happened on a pleasing combination of sea green and melon and used it twice.  Something colorful around a pale, tired face can be very cheering.  Those won’t be my last caps.

Seeing my niece, Christine, at reunion reminded me that I was waaaay overdue on her cotton blanket.  I knit a funky cap in the first days there.  It is from a fabulous yarn that was a gift from a friend at Flying Fingers in the Hudson Valley.  They’ve continued to have just what I want when I want it,  to be available for information and also suppliers of great fun.  The yarn is Ritratto from S. Charles, an unbelievably sparkly, soft, rayon and kid mohair with a touch of nylon and polyester in the decoration, that you can see here (fuchsia no less!):  http://www.flyingfingers.com/shop/index.php?main_page=index&cPath=20_1752_1758.   I felt guilty enough about the blanket to give in to Christine’s first request for the hat.  It looked adorable on her, and of course I failed to get a photo.  Anyway, I’m making short work of that blanket. 

The trip to Target yesterday was for supplies of my favorite kind:  equipping a student for that first year at college.  This is my third year in a row.  The first year, I found a great list at the Bed, Bath & Beyond website.  It covers everything from cosmetics to laundry supplies in a convenient checklist.  In addition to getting Chris settled at College of the Adirondacks, Dayna has a real change of venue this year as a new apartment-dweller.  She spent one year in the dorm, one in her sorority house, and now to the bigger world, sharing with a good friend.  Their furnished place has full-size beds and other minor changes that necessitate a bit of shopping.  We loved it yesterday.  We didn’t miss an aisle in bed and bath supplies. 

Lord I am talky!  Time to shut the laptop and knit myself to sleep.  There’s more time and cyberspace tomorrow.

Peace.

Reunion was so wonderful that I cannot write just one post about it.  All I can do today is start by summarizing some of the high points.  Over the next few days you’ll hear many more stories and reactions about the event.

Five great things about reunion:

1.  This was the first time that it was only us sisters and our children (and grandchildren).  There was a closeness and camaraderie that I haven’t noted at earlier reunions, and a commonality of purpose.

2.  I attended an orientation for a Landmark seminar, and learned something very important about myself.  More to come.  For now, just call me optimistic.

3.  Our hotel turned into a great accommodation for us to be together, with common spaces that really worked, and a lovely attitude towards us congregating there.

4.  I had every support that I needed in order to enjoy myself and spend time with everyone who attended.

5.  I felt like we included the parents well, having them come down for one night and concentrating our efforts around them while they were there.  Their visit included dinner together, a marvel of a family talent show, and breakfast the next day, and the parents were delighted. 

Back home, the tomatoes are thriving and I have picked seven today.  For the first time, I can see peppers on the pepper plants.  I drove home yesterday and I feel pretty good today.  I haven’t had to take to bed or be particularly slow since I arrived home.  Looking forward to more B cell killing this week, and lots of knitting. 

Peace.

The roster:  Of the six sisters, three are here, another will come today, and a fifth tomorrow.  The absent sister is well-represented by her daughter and two granddaughters.  Sister number two and her husband have all three of their children-one with spouse-and three grandchildren assembled.  Number four will be accompanied by her daughter Friday, and they will bring the family heads (my mom and dad) for a one day appearance.  The baby sister has her two daughters and a goddaughter with her.  I have my daughter and host son, of course.  I count 26.  For the first time, it seems that reunion will just consist of the core family, no cousins or distant inlaws, just the offspring of the precious couple, and their households.  We span the country in both directions, from Houston to Minneapolis, Palo Alto to New York City. 

This was a difficult time to promote a reunion.  We only gather every two years, and despite admonitions to start saving early, most of us didn’t.  Some relatives just couldn’t muster the funds, having sustained new births, job changes, the death of important travel partners, college fees, and every other manner of family stressors.  Conscious of these factors, those of us who organized the event tried to choose a hotel that offered in-room kitchens and free meals (daily breakfast and three days per week dinner), on-site exercise facilities (no gym fees), access to good shuttle service (three mile radius, again free), and on-site meeting areas (a beautiful dining area and lounge).  This Staybridge Suites has all that and is in a beautiful part of town.  It is recently renovated and quite well-appointed.  Our suites even have dishwashers.  At $139 to $149 per night, I feel that we have a bargain. 

The bigger bargain is having all this family.  When you see so many of us together, it becomes obvious that we are related.  There is so much talk, and laughter, and animation.  We tease and play easily.  There is no subtlety in this group, and little restraint.  We sat in the dining room from 8:30 to 11:30 this morning, some coming and going, most hanging around, finishing breakfast and then staying for the comraderie.  My host son came down when called, ate hastily, then retreated to his room.  When one sister discovered him missing, she called him back down on a false errand, making him sit around and listen to the banter, drawing him into the conversation almost against his will. 

Everyone’s out now.  They loaded into cars and taxis to go see exciting local atrractions.  Except me.  I’m sitting on the couch distracting myself from the pain in my legs and hips.  TV is on and I’m considering a movie.  I’ll knit. 

A friend has asked-and people do tend to ask this question a lot-why my disease flares.  I must first say that my disease has never been inactive.  I’ve never been in remission.  Remission is when, even off all medications, the disease is quiet.  I haven’t been there even once in 16 years.  So first, I guess a flare may just signal the end of a medication’s effectiveness.  I’ve been through prednisone, methotrexate, Imuran, Plaquenil, naproxen, Enbrel…those are just the ones that come to mind easily.  The chemo that I take now is the clearest demonstration of a medication’s effect passing:  it kills the B cells, I get better, then the B cell population is replenished, and I begin to get sick again, signaling that it’s time for a new dose of chemo.  It’s not food, or activity, or emotion, or anything else controllable that triggers my flares.  The fire is always there, it’s just a matter of how effective the firefighter is at any given time.  The wolf lives.

No one knows what makes lupus begin.  Clearly, I had a normally functioning immune system as a child.  Somewhere along the way it sustained some damage that made it change.  I believe that the damage was environmental, exposure to some toxic chemical in the form of a food additive or a home care product…something that made my immune system sit up and take notice and start to fight against the wrong substances.  The scientist who isolates a specific cause will be my hero. 

Meanwhile, an overly thin Jacqueline Bisset is on my television set, being psychic and entertaining me enough to make me forget that I can’t do what the other reunies can do so easily.  I’ll meet them again at dinner. 

Peace.

My dog totally dissed me today.  As we headed out to the family reunion, we dropped off the dog with her favorite person, my friend who can speak dog fluently.  Lucy never looked back.  We called her name, stroked her back, tried to get her attention, but she wouldn’t even turn her head our way.  Disgusting.  She doesn’t have to be so blatant about it.  She could pretend that she has seven-plus years of affection for us.  I want to know if she’s considered who will push her wheelchair when she’s old.  Hmmph. 

Today, I called a nutritionist for an appointment.  She asked me a dozen questions about my eating habits and chocies.  When I said I was a vegetarian most of the time, but ate a little fish, she said “so you’ll be getting all your protein from fish?”  Hmm.  Hope she works with other vegetarians.  I want to get back to a fully vegetarian diet and I don’t mind giving up fish.  I’ll get my omega 3s from flaxseed meal.  I have to turn the kids loose to feed themselves and concentrate on what works for me.  If I’m really getting better from this flare, I’ll be able to exercise a little soon, and I am tring to line up all the systems and coax this body into better shape.  Whew, what a job.  Might have to hire some help.  Oh yeah, that’s what the nutritionist is-some help.  The first consultation is only $40 for an hour!  No wonder I had a hard time finding a local RD (registered dietitian).  No one could run a solo business like that.  Gotta be on salary.  In this current obesity epidemic, they should be making googobs of money. 

We arrived at family reunion central this evening.  I was only in the lobby five minutes before four family members came running up for hugs.  One of the kids speculated that I must be 67 now.  I’m gonna short-sheet his bed!  Damn.  He’s not four feet tall, won’t even notice.  It’s totally fun to have Woods relations drifting in and out of our room, calling each other on the phone, checking to see who’s not here yet.  Everyone’s sharing info about the hotel, asking what is scheduled and where we can go.  I’m distributing sheets with our scheduled activities and a list of Atlanta attractions.  In this rough economy, we are concentrating on inexpensive dining and activities.  I learned a lot from compiling the list.  For instance, the High Museum has a pretty stiff admission fee, but it has photography and folk art collections at a separate location in the Georgia-Pacific building that can be viewed for free.  All the Martin Luther King Jr. exhibits at the memorial site are free.  The Stone Mountain laserlight show is a bargain at $8 per car, no matter how many folks you cram into it. 

One characteristic of the Woods clan is that we all seem to be big puzzle and game people.  Everyone who drives here will have a bag of games and cards and other stuff for communal enjoyment.  (The ones who fly in are lucky to have a paperback book and deck of cards.)  The children are admitted into the games as soon as they are able to push a piece around the board.  Already a group has started a Scrabble marathon in the lounge. 

The hotel put us in a handicapped room.  I didn’t request it, but it’s great!  A little more maneuvering space, huge bathroom, electrical outlets at table height…don’t need a wheelchair to appreciate this. 

Going to knit a little now.  No hotel can be temporary home until I’ve done some knitting. 

Peace.

In front of me I have two chemocaps.  Panda Cotton cap: 

Panda Cotton is 59% bamboo, 25% cotton, 16% elastic nylon.  Knit on size 2 circulars with two sets of ribs at the bottom and a spiral crown.  It is so soft and fluid, beautiful stitch definition.  My in-laws’ friend should be comfortable even if his scalp becomes sensitive. 

Crystal Palace Poof cap:     Knit on size 8 circulars, all garter stitch.  Gorgeous eyes belong to the daughter.  She makes everything look charming.  Poof is nylon microfiber, washable and soft to the scalp. 

I finished the Panda Cotton hat tonight.  Absolutely love it.  I might have to make one for myself.  All my knitting work today went into this hat.  I’m ready to pick up something else now. 

I was hoping to get some photos of tomatoes tonight.    I took the camera out in the dark. This is a cluster of six on the Black Plum plant.  They are approximately two inches long now, but still no hint of red on this bunch.  The ripe ones stay dark green on one end, and the inside is very dark green, almost black.  Very pretty. 

  This photo shows the largest of the tomatoes right now.  It is about three inches in diameter, and continues to grow, despite quite a few dead leaves surrounding it.  This plant is one of two that seem to be dying, but the tomatoes keep on coming.  As photos, these are the pits, but they do illustrate my undying affection for my readership, that I would risk my limbs to voracious mosquitos in order to document the fruit that I’ve been discussing. 

I know that you aren’t hanging on for my photography anyway.  It’s my utter ruthlessness in taking the machine gun to those B cells and calling a funky immune system a funky, malfunctioning immune system!  I’m such a peaceable person otherwise.  When my daughter was little, she would tell me “Mama, you have to tell me that you’ll kill me if I do that again.”  She wanted me to threaten her like her friends’ parents threatened them.  I couldn’t do it with a straight face.  When you hear me say “I’d like to slap him into next week” I am expressing a totally cerebral feeling.  I’ve only had one physical fight in my life.  It was in sixth grade.  I was surprised, attacked in the girls’ bathroom, and I didn’t have a clue how to fight back.  Ouch.

Thanks for the good health wishes.  I am even dreaming about being healthy.  Last night I was at work, knowing that sooner or later I’d be sick again, but determined that I’d do clinical work.  It was fun until an elderly lady pooped on the exam room floor.  Sigh.  Must have been a warning to stay home.  Not that I ever had that experience in my office. 

I have enough to do at home, for goodness sake.  I hope no one is reading through posts, counting the projects that were mentioned and then never showed up again.  For instance, at family reunion I’m going to encounter the niece for whom I started a cotton blanket in January.  The blanket is only half completed.  I’m going to take some of the Cozy Cotton with me and knit like crazy, so she will see that I truly have good intentions.  Dayna has been using her blanket at home, and it makes me feel wonderful to see it loved and used.  I want the niece to have hers before the next school term starts. 

I am rambling.  And yawning.  And, so sorry, one eye is on Jessica Fletcher in Murder She Wrote. 

Peace.

People!  A physical improvement today has me feeling so much brighter.  My personal sun has been shining all day.  I’m less stiff and in a bit less pain, and that makes moving around easier and less taxing.  The consequence of this is that I’ve tackled some jobs I didn’t think I’d get to for a while-cleaning out jobs that leave me feeling less cluttered in my brain as well as my home.  I put a little stool in my living room and plopped down in front of a yarn shelf and a big box of yarn and unfinished projects.  I sorted through the box, sending things to either the shelf, the prison yarn project box, or the trash.  That done, I went to my craft room which is dangerously overloaded and tackled another box of yarn and miscellaneous unfinished stuff.  Again, a three-way sort, with a few balls salvaged to shelve and the rest divided between prison and trash.  Barely a dent in the clutter I need to attack, but just like B cell death, a start.

Julian popped up again on his way back to his college town.  It was lots of fun seeing him and an old friend of his that I adore.  That was an unexpected treat.  We were all at home most of the day, and I enjoyed that.  I spent my time with them knitting and playing games online.  Julian propped up next to me to help with a word game; we were a fierce team, playing against lots of online competitors. 

I just stepped out on my porch in the humidity and heat to check my tomatoes.  In the dim porch light I didn’t see any tomatoes with red, but the number of tomatoes on the vine is astounding.  On one of the black plums, the tomatoes are hanging in clusters of up to six.  Every plant has tomatoes, even the two that I think I’m losing.  I’ve picked five so far, but the next two weeks are going to multiply that many times.  Due to the suspicion of Salmonella infestation we’ve eaten fewer tomatoes this summer than usual.  I can’t wait ’til it tastes like a real summer.

I had a special chemocap to work on today.  My in-laws have a friend at church who will begin chemotherapy soon, and he isn’t looking forward to losing his hair.  He told them he needs caps that are interesting and unusual.  I chose a Panda Cotton sock yarn to knit him a cap.  I’m about halfway to the dome.  I’ll photograph and show it tomorrow. 

This fireworks thing has turned into a real frustration.  This is the third night that we’ve had to listen to them.  Last night was like a full performance again, lasting two hours.  Someone set off sizzling sparklers in my back yard; I could hear them, and my daughter collected four burnt sticks this morning.  I was hopeful of letting my dog have her peaceful time in the yard tonight, but they are still at it.  At this point, we are beyond rudeness.  There’s nothing acceptable in making loud noises throughout the neighborhood at 11 o’clock on a work night. 

I’m expecting a busy today tomorrow.  Death to B cells!  Okay, I’ll stop my noise right now. 

Peace.

Soooo, Happy Independence Day.  It is almost 11 p.m. and my neighbors have kept up their artillery barrage of fireworks for more than two hours.  My brain is exhausted.  It works slowly at best during a flare of lupus, and the constant noise has exaggerated this.  My reluctance to approach them and request a cease fire reminds me of my daughter’s difficulty confronting her peers when they are doing something outrageous or hurtful.  We all want to keep the peace, don’t we?

Tonight, after another person asked me if I was watching the ABC series “Hopkins”,  I went to their website and watched the first two episodes.  I knew that folks would ask me because of my residency training at “the John”, and I did have some curiosity about the lives of the young people training there 30 years later.  A few things struck me.  First, it doesn’t seem that the 80 hour per week limits on clinical training time is actually being practiced.  There was no limit when I was training, and our weeks averaged 120 hours “at the bedside”, as Victor McKusick called it, pointing out our good fortune to be immersed in that service (read “servitude”).  The second thing that struck me was the obnoxious music, complete with lyrics that were meant to reflect whatever emotions went with the situation.  It was cheesy and frequently inappropriate-too light a treatment for the gravity of the subject matter.  I don’t know if the regularly scheduled broadcasts were heavily laced with invitations to hear more of the music, as the webcast was.  Third, as many medical shows tend to do, “House” being a notable exception, this series is heavily weighted toward showing surgical specialties.  It is grossly misleading, as the majority of physicians are not surgeons.  It falls into the trap of presenting medicine as a “let’s go in and fix it” kind of profession, something like plumbing with more delicate pipes.  The real meat of medicine is prevention and diagnosis.  Most physicians are involved in trying to keep people healthy, assessing patients’ level of health, and figuring out what’s wrong and what can be done about it when someone has a problem.  The vast majority of medical problems that plague people (diabetes, high blood pressure, liver and kidney and heart disease, asthma, infections, addictions, allergies, arthritis and joint problems) are treated with lifestyle changes and medication, not surgery.  When a patient does arrive in the surgeon’s office, she/he usually already has a diagnosis, with tests to prove it, and the surgeon is the technician who spends ten minutes in the office and some number of hours in the operating room to “fix” it.  The more unusual case is for the surgeon to be the one who has to operate in order to find or diagnose the problem.  I do not say this to suggest that surgeons are any less smart, but to note that the role of the diagnosticians and physicians who use an arsenal of medications and other nonsurgical techniques is vastly underplayed in the television world.  And of course, I say this from the point of view of a Board-certified Internal Medicine specialist who loved the realm of diagnostic medicine and the long-term relationships we kept with our patients as we tried to improve their lives.  No prejudice-some of my best friends are in surgical specialties.  Oh wait, no they’re not. 

I heard three male physicians ask patients for reassurance instead of asking how they felt:  “are you alright?”, “are we still friends?” (to an older woman whom he just met in the emergency room), “are you happy?”.  Ugh.  Thoughtless words meant to forestall a patient’s revelation of how s/he really feels; it’s easy to put words in someone’s mouth, time-consuming to actually listen to them.  I also heard some overly-optimistic words about the effects of some surgery.  Um, no doc, when you cover up that piece of brain by replacing the lost section of skull, you aren’t going to heal the brain.  It’s still damaged, and will have to heal itself-or not.  On the up-side, a capable young woman who is the first female urologist at Johns Hopkins.  Her thoroughness and attitude with her patients was refreshing. 

There was also a lot of talk from the surgeons about how they held patients’ lives in their hands, yada yada yada.  Not so much information about what they actually did.  Lots of angst, but nothing to show the humor and irony that always accompanies it when you’re taking care of patients.  I was sort of grossed out by an attending neurosurgeon telling his preschoolers about his work and looking for affirmation that he was a surgical superhero.  Come on, guys.

Ooh.  I had more to say about “Hopkins” than I thought.  Frankly, it wasn’t typical of my years there or the people I trained with.  Thank goodness.  (sung to the tune of Death and All His Friends)

Peace.