My Sister Was Here – Hallelujah!

In my April 6 post, I talked about looking for infections.  If I believed strongly in jinxing myself, I would be freaked out, because on April 7 I had to start antibiotics for strep throat.  I have a swollen, red tonsil with a pocket of icky white stuff that isn’t better yet.  I emphasized vigilance about infections because prednisone masks the symptoms and they tend to progress further before we notice them.  I haven’t had fever or intense pain, which would have been guaranteed without the prednisone, but the flip side is this prolonged course. 

I mentioned my elf.  She had to remain anonymous until she announced her presence to the local family, but it was my youngest sister, in from Minneapolis.  It was the first time we pulled such a prank, keeping her visit plans a secret, and also the first time she stayed at my house instead of in town with the parents.  We had a wonderful time, from the delicious secret plans to our conversation on the way to her departure shuttle.  Who knew that highly different, feuding childhood sibs could turn out to be such close friends? 

Who knew that she was coming to take care of my house and shorten my prep for putting it on the market?  It was her spring break, and I anticipated sitting on the deck with a beverage and chatting about life.  Hah!  Her plan was to whiz through my house, throwing away things, packing others in the pod, and rearranging the remainders into a fashionable showplace.  I had to help, instead of putting my feet up and nursing my sore throat.  Claiming that she “loves” organizing, she went through yarn, books, and clothes with equal fervor, shaking her head at what I’ve accumulated and moved around over the past twenty years.  She cleaned my carpets.  By the time she left, I was out of ways to say “thank you”.  Maybe I can knit her a car. 

We took time off to make two visits to the parents.  They were thrilled to see my sister and overjoyed that she brought her animal, a blue pomeranian, with her.  Nothing makes them happier than dog visits.  Mitchell tipped around their house, leading Daddy with his leash.  He sat in Mama’s lap for a restless moment, letting her hug him and play with his abundant hair.  The second visit had to be short because they were preparing to pick up friends and go to Olive Garden.  We asked if there was a special occasion.  My dad said “No, this is what we do,” as if outlining their busy social schedule.  Chief Sister in Charge of Parent Care has done a wonderful job of making recreation for them. 

I didn’t forget my instructions when my sister left yesterday.  I continued clearing out my room today, and changed the old, dark curtains to light, neutral, crowd-pleasing ones.  I put away-or discarded-a boxful of things that I couldn’t live without last year.  Things lose their appeal so quickly.  I should confine my purchases to books, music and craft supplies. 

Oh heck, 1 a.m. and I haven’t taken the bedtime dose of antibiotics.  At this rate, my tonsil will just die and fall off. 



Prednisone, Infections & the Organizing Elf

While I’m thinking about the symptoms related to my therapy, I have to mention the things that I look for after a big prednisone taper.  Every flare gets one, this time only to 25 mg, sometimes to as high as 60 mg, and the side effects are significant. 

If the taper works well it can be done in three or four weeks.  Usually I stay at the top dose for a few days, then my dose is gradually tapered , no faster than 5 mg every three days, until I am back to my baseline dose.

 While I am on the higher dose I will be hungrier, so if it lasts a long time, I can expect to see some weight gain.  I will also retain fluid, and this may last after the taper has ended, requiring extra diuretics to get rid of the swelling in my legs and feet.  These symptoms are annoying and require some attention, but by far and away my worst problems are caused by the increased susceptibility to infection. 

When I am on more prednisone, I am vigilant about infection.  I pay close attention to fever, unusual pain, diarrhea, any joint that is swollen and red out of proportion to the others, productive cough, rash, and itching.  Attention to the skin deserves further explanation.  Yeast infections of the skin are quite common with corticosteroid (prednisone, etc.) treatment.  They generally present as itchy, bright red skin in patches.  You find them mostly in moist areas – folds of the groin, buttocks crease, under breasts, over the ears where glasses sit – I know, this is such a fun topic.  It is helpful to pay attention to these areas and request prescription treatment (usually Nystatin ointment or powder) at the soonest sign of infection.  This is not contagious, but it can be intensely uncomfortable and become superinfected with bacteria, a much harder problem to treat.

Now, on to more exciting things.  A little elf has come to my house and organized my kitchen table area.  Suddenly I can see the entire surface of the table, and the mishmash of display equipment, UFOs (unfinished objects), finished but unphotographed items, and other miscellaneous business paraphernalia is gone.  The elf was quite aggressive about throwing away unnecessary materials.  It was also insistent that I designate places to store anything that I’m not using RIGHT THIS MINUTE.  I was forced to sort through piles of mail, put photos in a drawer, and discard old greeting cards.  I’m sure there was lots of good stuff that I just hadn’t gotten around to assigning a crafting purpose.  As we speak, the elf is putting away every stray ball of yarn in the house.  Geez! 

Okay, complaining, but this help was soooo needed.  It’s all those little trips back and forth to put things away that I cannot make right now.  If I had stooped to pick up all the stuff “stored” under my table and next to it in the corner, I would need a solid layer of Icy Hot heating patches on my back, legs, and shoulders.  I did draw the line at cleaning off my bed.  How would I function without eight kinds of yarn, three sets of needles, and three UFOs on my bed?!


what i’m not doing

“Most of the stuff that got us into trouble was perfectly legal…”  President Obama said that last night.  I missed him on the Tonight Show.  Sleep is very high on my agenda during this flare.  I’m sorry I missed his appearance, because I always feel reassured when I hear him speaking to the public.  I hear the voice of reason and calm, and the logic and intense concentration when he is dissecting a problem remind me that we have a smart, conscientious presence in the White House.  I sleep better.  I “rest assured”.  Love that phrase, and its literal meaning.

okay.  caps for the president, but the fingers are still stiff so i have to regress.  25 milligrams of prednisone is not removing the stiffness.  that is a worry to me.  i don’t want to go any higher.  i hate the 60 milligram blasts that make me manic.  i despise being so pumped up on prednisone that i rush around the house doing chores even as i know that i should be moving more slowly, resting more.  once i was so manic that i left my house on the sabbath (i was really celebrating it then) to go to the hardware store, and i had to look at myself closely to make sure i was wearing all my clothes.  monitoring oneself that closely is no fun, but  cruising around ace hardware choosing tomato plants was still a blast. 

i know my body as an extremely chemical entity, responding one way to x and another to y, predictable as clockwork in some aspects, an experimental subject in others.  the illusion of control-my life depends on who’s in the pharmacy. 

these are things that are not getting done while i wait for my next treatment:

1.  photographing new products and listing in store

2.  grocery shopping – although i may take a ride in the cart today

3.  visiting friends

4.  sorting out clothes and clearing my next room, the master closet

5.  trip to the post office with nonurgent returns

6.  trimming lucy’s nails

7.  vacuuming up the spilled scraps from the shredder

8.  whipping up a pile of stuff for the opening of the chattanooga market

9.  sorting completed projects into their proper bins

10. random phone calls to check up on family and friends

11. other stuff that i’m suddenly too tired to delineate

my treatment is scheduled for april 1 and 15.  that will put a stop to this nonsense.


Uncovering the Elephant

Yesterday a friend announced that she had received her emblem for losing 10% of her body weight in the Weight Watchers program.  First thought, congratulations!  Second thought, why haven’t I been going?  Last summer I looked for a local program and found one a mile from my house.  I checked the meeting times, thought about it, and then dismissed it.  I couldn’t see myself feeling well enough to get to the meeting every week.  It was too early.  It was at a gym where I’d have to pass by millions of fit, trim people.  Blah, blah, blah. 


Summer is over, I’ve gained weight since then, and I’m still not doing anything substantive about my obesity.  You hear me glossing over the side effects of prednisone (slow metabolism, weight gain), talking about my valiant efforts to exercise (awful damn rare), and discussing my cooking (but not the overeating part).  In almost 300 posts, I have not had a real discussion about my weight. 


Obesity is truly the elephant in my living room.  Since my diagnosis with lupus I have gained a whole person.  I have a BMI of about 50.  I need to lose half my body weight.  At least a part of my pain and morbidity has to be due to this weight.  Yes, it’s a by-product of therapy, disease, and genetics, but that isn’t an excuse for not dealing with it. 


Well, wait.  I have dealt with it, to some extent.  I’ve Nutrisystemed.  I’ve purchased exercise equipment.  I’ve walked.  I’ve counted calories.  I’ve made intake journals.  I’ve Atkins’d.  A couple of these things have actually produced weight loss, but not sustained.  Mostly because I haven’t endured.  And I haven’t gotten out there and stood up with other fat people and said “Hello, my name is Essie, and I am fat.”  


This morning I did three and a quarter hours of continuing medical education on fat, exercise, and diabetes.  It is a miracle that I’m not a diabetic, but knowing more about current treatments can only help.  There were some concrete, brief lessons that I can share with you from my morning work:

1.  It takes more exercise than we thought to help maintain weight loss.  If you lose 10% of your body weight and want to keep it off, you probably need 275 minutes/week of exercise – not the 30 minutes 5 days a week that we used to recommend, but 55 minutes per day, 5 days per week. 

2.  Losing 20% of your body weight usually puts diabetes into remission.  Imagine that:  If you weigh 200 lb, and lose 40, you can make your diabetes go away.  No more medicines.  No complications. 

3.  48 hours of cutting back on your calories will make a huge change in fatty liver.  Two days (!!!) of eating reasonable calories can turn your fatty liver around-talk about baby steps. 

4.  There are newer diabetes medicines in use that have huge advantages over the old stuff:  improved GI function, weight loss instead of weight gain, fewer side effects.


I figure going to a group program will be good for me.  First, I’ll burn more calories just by getting dressed and getting in the car and walking into the building than if I was still sitting at home.  Second, I’m very competitive, and  I should be using that to my advantage.  I will cut calories all day long to beat out Mary Sue by a quarter pound weight loss.  Third, I need the help.  Clearly, tackling this alone hasn’t worked.


Since last summer the weight loss program down the street has closed.  Now I have to drive 10 miles.  I am going to put on my big girl panties and stop being a whiney baby and go.  Isn’t that what the tiny little 8 lb 6 oz baby Jesus would do?  (Please refer to the Book of Talladega Nights, Chapter 3, Song of Ricky Bobby)


…and Then the Bed Fell

Some days I feel heavier than others.  I’m not talking about the number I see on the scales, but the impression my heft makes on the world around me.  Today I made a big impression.  My bed fell.  It went like this:  my daughter asked for some help shaping her eyebrows.  I sat down on my bed and she put her head on a pillow where I could easily reach her.  I scooted a little higher on the bed, and more to the edge, putting too much weight over the joint where the side rail hooks into the headboard.  BAM!!  We went down.  My girl and I looked at each other, stayed still for a moment, not knowing if we could make it worse by jumping up, and then we busted out laughing.  Fortunately, my son was also home.  He ran in to see what was the matter, finding us unhurt but unable to stop laughing.  After a while we composed ourselves and carried the poor bed parts to the garage.  My mattress and box spring are temporarily on the carpet.  Actually, not a bad height to operate from.  I don’t have to lift my laptop as far.


Sometimes I get angry about the prednisone and the weight, but mostly I bide my time, waiting for the low prednisone months with no flare to increase my exercise and do my best to shed some pounds.  Regardless, I look in the mirror every morning and smile at myself and think “Hey, you gorgeous woman!”


I promised photos.  I chose this wonderful Malabrigo that’s been on my shelf for ages to go with the dusky pink hat, knitting the mitts with a bit of a ruffle at the wrist.  I’ll find buttons that go with the large handmade buttons on the hat. 

endnovknits-020  The next hat and scarf had to match the rust brown cashmere mitts:  endnovknits-019  The mitts have eyelets across the middle, so I put eyelets around the top of the hat.  The band is seed stitch with an overlap that will have one large button.  I will publish this as a free pattern, probably tomorrow, as I’ve had a request from a knitting accomplice. 

This is the third set.  I had a mandate for the color, but nothing else.  I chose a basketweave pattern all over the hat and scarf, but in tiny boxes on just the edges of the mitts.  endnovknits-016endnovknits-018


I’m waiting for yarn to come in for two projects.  In the meanwhile, black Karabella Supercashmere fine (two strands at once) for my cousin’s mittens.  Yum.  Every minute with this yarn is good.  I’m twisting a cable up the side of the mittens.  Can’t resist.  Cables are so satisfying. 



Hummus, Cotton, and the Second Debate

I’m watching the debate.  I’m eating garlic hummus.  I’m thinking about where my Sublime cotton yarn with the low-impact dyes could be.  If Tom Brokaw appeared in the room and told me to prioritize my evening activities, it would start with selectively tuning out McCain.  I don’t need a large television set, or one with the latest picture technology.  I just want to tune out McCain.  Oh my gosh, he just said “have the smartest people in America come together”, as though he really values intelligence and would listen to them. 


The Sublime yarn is the second priority.  I want to do some children’s things, hats and sweaters, with that yarn.  I’ll take a brief color break from the bright, saturated colours of the Merino Brights, and handle a very soft yarn with colors that are pale and muted. 


Garlic hummus is still in the lineup, but since I’ve been eating as I listen and type, it’s going to be a nonissue shortly.  What’s not a nonissue is my eating, in general.  I can tell that my prednisone dose is down.  This morning I woke and knitted for two hours before I was hungry enough to have breakfast.  I have no desire to snack or nibble between meals.  My plate is never full to the brim, and I sometimes can’t finish the food on it.  I haven’t been waking at night feeling ravenous and making treks to the kitchen to explore the snacking options.  My taste for certain foods has increased (vegetables, primarily) and my desire to have meat is gone.  I truly despise the state that high-dose prednisone imposes on me.  I hope I can extend this wonderful hiatus indefinitely. 


McCain is interesting to watch without the sound.  It makes me notice things like his expression.  He is tight-faced, like a cranky senior citizen.  His expression says “my hemorrhoids hurt”.  Obama’s body language is easy, relaxed.  He moves like an athlete.  The audience is very quiet, sitting stiffly in their chairs.  Only a few of the questioners seem comfortable reading their questions into the mike.  Perhaps they should have hired pinch-readers. 


I am comfortable enough with the repetitious nature of this debate that I can leave the room.  Time to go find my yarn and cast on something fresh.



Coming Out of Flare for a Sick Child

I’m watching America’s Got Talent.  The judges and admin have changed the rules, narrowing the field of people who have traveled all the way to Vegas, sending some home before they even perform.  It’s a reminder for me of real life.  Sometimes the rules change.  Sometimes the landscape changes.  Sometimes we change.


Last week, my household was all about welcoming my young cousin and preparing my daughter for leaving.  The cousin arrived, and she is a perfect addition to our household.  She eats like us, enjoys the same television shows, and laughs with my daughter.  I am thrilled with her willingness to be with us, to participate in our family and share her lovely smile.  She learned to knit yesterday, probably in self-defense.  She shared our all-veggie meal today without complaint. 


On the other hand, my daughter is still here, because she has been ill.  It seems to be an exacerbation of an old illness, but her doctor is doing some tests to determine if something new is taking place.  The preparation for going to school stopped midstream, because she has barely been able to leave the couch for a week.  I am having mother freak-out, of course.  Just because you know the medicine doesn’t make it easier to bear.  It may make it worse, because you constantly think of all the horrible possibilities behind every little symptom.  She is taking it with good will, and has assumed the responsibility for helping her cousin to feel comfortable in the house.  My child is funnier from her sickbed than I am when I’m at my very best. 


I received a link today to an interesting challenge.  STC Craft is giving away a mitten pattern (Melanie Falick Books – News – The Big Mitten Give) if we agree to make a pair for someone in need.  There are no papers to sign, just your unspoken commitment.  If you have a short attention span and can only complete one mitten, you can donate it to your closest Veterans Administration Hospital.  Sadly, there are hundreds of injured soldiers coming home, needing only one sock or one mitten.  I’ve designed and made fingerless mitts before, and absolutely love them.  I will make many before the cold weather comes.  This mitten pattern will go on my list for my local Salvation Army.  Charity hats have been in my yearly schedule.  It will be fun to vary it a bit this year. 


My current projects have stalled at various points.  The niece’s blanket needed a new skein of yarn, and it just arrived today, so I can complete it in one good day and show off the crocheted connections.  The little girl’s sweater that I am knitting for a contract is lovely.  It has two inches of lace design at the bottom, and I’ve completed the body of the cardigan.  The sleeves will be cast on tomorrow and knit together.  They will get a bit of lace at the bottom, too.  The neckband and front placket are last.  This is the kind of design that I enjoy immensely.  I began the sweater with a stitch pattern that I liked, but decided that it didn’t have the feminine, little-girly look I was aiming for.  I frogged it and began again, on the right note this time.  The huge striped tote that I’m making from Noro Kureyon has haf its handles.  I decided to make one short one and one very long one.  The long one can be pulled through the short one to close the bag, and then placed over the shoulder.  I try to make sure that very large bags have a secure carrying mechanism, preferably one that involves placing the weight on a shoulder and back rather than a wrist or hand. 


The one project that I’ve been carrying around through Dayna’s appointments is the bathmat that I started with barely a thought.  It’s from a Buton d’Or cotton/acrylic 60/40 mix, machine-washable, and rather spongy feeling.  I’m using two strands at a time and it makes a thick fabric that will be easy on the feet.  It’s a very simple stockinette mat with a garter stitch border.  I purchased the yarn from a sale basket in Florida, knowing that it woud declare itself later.  Two days ago I walked by and it said “I can be the bathmat that matches Dayna’s shower curtain.” 


Today I awoke with one of those little improvements that tells me I’m on the recovering side of this flare.  It wasn’t huge, just a perceptible increase in energy.  My prednisone is at 20 mg and I can sleep again.  It seems that I am making up sleep with my four-hour naps.  Another improvement.  I’ll be back to my exercise bike and walking soon.  God willing, life not interfering.