The Count

17 and 1/2 pills.  I hadn’t counted in a while, and I was a little surprised.  It is truly distilled to a minimum: 

1.  Prednisone takes five tablets right now, a 5 mg and four 1 mg, to make up my 9 mg dosage.  I am on a very slow, gradual taper.  In two more weeks I can decrease by 1 mg.

2.  Three vitamins, B12 for my mostly meatless intake, folic acid for the two medicines that deplete it from my system, and D to replace the action of the sun that I must avoid.

3.  One nonsteroidal anti-inflammatory, for my osteoarthritis.  Helps with pain, too.

4.  A low-dose diuretic for the swelling, and potassium to replace what it depletes.

5.  A beta blocker for the chronic tachycardia that I’ve had since my diagnosis.

6.  Two antidepressants, one of which helps tremendously with the lupus and fibromyalgia pain.

7.  Over-the-counter antihistamine.  I am allergic year-round, crazy when you consider I’m on prednisone daily.

8.  One pain pill, still on minimum dosage with as-needed use.

9.  Low-dose aspirin to prevent the crazy blood-clotting that I experienced a few years ago. 

Periodically I need to lay it out, pill by pill, and convince myself that every bit of this regimen is necessary.  The alternative is to start dropping off pills and wait for the consequences, something my training and experience discourages.  I understand the aversion most people have to taking so much medicine.  This is not, however, polypharmacy.  Polypharmacy refers to mindlessly throwing prescriptions at problems without considering necessity, interactions, or possible alternative therapies. 

That’s the pills, folks, just the pills.  Still on weekly injections of methotrexate, and the rituximab infusions every four to six months.  Also on diet with very few animal products, as much exercise as I can tolerate (including our new Wii), and positive thinking. 

This inventory will have to do.  I have to go deal with a stinky, disobedient dog.

Peace.

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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.

peace.

The Stuff of Happiness

I wake up in the morning, get out of the bed and walk to the bathroom.  No pains, no stiffness, nothing calling to me.  I walk a little slowly, still conserving energy, but it isn’t from discomfort.  I forget my morning medicines and don’t recognize it for hours.  I take on physically demanding tasks, sitting on the floor to sort through boxes, carrying finished items outside to photograph them, packing boxes to send away.  I do laundry, carry piles of it to the bedroom.  I pick up the phone and call people for long discussions.  I make plans. 

 

That is the way I live when I am recovering.  That is the way I am living right now, today.  A vast improvement over a few weeks ago.  The biggest change is that all those things are done without a lot of thought.  I don’t have to list them, calculate the energy each task will take, figure in rest time between chores, knock the bottom ten off the list.  I can move from one task to the next, add in extra things, hold a conversation while I work. 

 

I know all this sounds so ordinary as to be boring.  That’s probably how your every day goes.  Not so for me.  I had a week or two of this in the spring, before I fell into another flare.  It feels like a miracle when these easier days return.  I’ve worked up to about 8 minutes and 1 mile on the exercise bike, my taste for vegetables and fruit has returned, I’m feeling the prednisone side effects less every day…pushing towards normal.

 

I have three or four knitted caps lined up to photograph.  Two are on the styrofoam heads, blocking.  I’m knitting a loose, casual wrap on size 17s, brown Rowan Big Wool.  It has a giant cable, knit in a separate panel, running down the middle back.  I have a tiny bonnet in the lilac llama blocking so I can finish the construction.  It has a rather elegant construction, if I say so myself.  I’m feeling some mittens coming on.  Real, full cover mittens, my first ever pair.  They will have to go to a for A (afghans for Afghans).  All kinds of ideas are in my head, projects waiting to be born.  I am happy working.

 

Peace.

Finishing the Organic Cotton Baby Sweater

I did it, and it’s adorable, and I’m going to cry when someone buys it.  I absolutely love how this sweater turned out.  I’ll show it to you first, talk later.organiccottonbabysweater-frontcomplete.jpgTo knit the neckband and front bands, I used my circular needles to pick up and knit stitches from the right front bottom around the neck to the left front bottom, picking up all the garter bumps on the fronts, and then each stitch along the back of the neck.  I knit them LOOSELY for that pickup row, then followed that with a wrong side row consisting of (purl, purl, knit) all the way around.  The following row (right side) I did (knit, knit, purl) to continue that ribbing.  This was followed by one knit row, and at the end of that row we’re back at the right side bottom.  I wanted my button holes to be on the right placket, so on the following row I knit the whole row but evenly spaced four yarn-overs (each followed by knitting 2 together) on the placket.   On the return row I knitted every stitch and bound off all of the stitches on the left front and neckline.  When I reached a few stitches above the first yarnover I stopped binding off and knitted to the bottom of the placket.  I knitted one more row of placket, then turned and came down, binding off.  This gives a buttonhole side that protrudes and conveniently overlaps the other front.  You can see that in the large photo above. organiccottonbabysweater-backcomplete.jpg   Here is a shot of the back. 

Here’s a photo of the neckline, which is knitted loosely enough to not chafe the back of the baby’s neck.                               organiccottonbabysweater-neckcomplete.jpg

I seamed the sleeves, underarms and sides with the right sides together.  The last issue was choice of buttons.  I wanted something in a color that occurs in nature in conjunction with this nice brown, and a texture that was also natural-looking.  I almost settled on the seafoam buttons, but I found the small squares that seemed to be a perfect fit-more subtle coloring and a wood-like appearance. organiccottonbabysweater-buttonchoice.jpg

I’ve measured the chest size of the sweater and compared it to my handy chart and it is a size 18 months.  The only thing left is to list it in my Etsy store.  If you’d like to make the sweater yourself but want to make a different size, I will rework the pattern for you for a small fee.  If you are adventurous, you can do the resizing yourself by checking measurements against your gauge.  Infants and toddlers don’t have many curves so you can make proportional changes very confidently.

This has been a lovely weekend.  I’ve had a visit from my college girl, who needed to be home for an appointment tomorrow.  The friend who carted away my goods to sell at the religious convention came home with a small check and shared our dinner.  She’s a friendly, gregarious salesperson and I’ve no doubt that my business cards are all over the state now.  I’ve survived this few days of terribly painful feet without either of them falling off, and with hardly a thought of the axe treatment.  (My friend was right, it’s such a messy way of dealing with them!)  I have a plan for continuing with a little exercise.  I’ve started to amass pieces of paper to take to my tax people.  Only a few more days of cellulitis antibiotics, and I’m still seeing improvement.  Prednisone is finally down to 10 mg. per day.  Goodness, what more could a woman want?

Peace!

Two-Mood Morning

daynasblanketseconddraft-001.jpgI told you I wake up happy and optimistic.  That includes looking forward to my breakfast, which is something I never skip (and you shouldn’t either–don’t get me started!).  This morning I thought a lot about what to fix for breakfast.  Because the prednisone makes me wake up hungry, I had a banana and a cup of coffee while I was thinking, and I read my email and let the dog out and then went back to the kitchen.  I was craving protein, specifically meat, and I compromised with some Better Than Eggs microwaved with shiitake mushrooms.  No big prep-I keep packages of shiitakes in the freezer.  Waved some Mrs. Dash Tomato-Basil-Garlic over it.  It was delicious, but a total nutritional compromise.

You see, when you have an autoimmune disorder like lupus, eating recommendations are for a low-protein diet with the majority of your proteins coming from non-animal sources.  Dr. Weil explains this and gives very specific recommendations in this article:  “The Wellness Diet:  Anti-inflammatory Diet Basics and Diet Tips” at http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet.  If you search on his website you can find it in a briefer form, but I love you dearly and would like you to have the more complete information.  Ordinarily this wouldn’t be a problem for me.  At heart and in practice I am usually a vegetarian/vegan.  But my ability to comply with that is sorely compromised by the evil prednisone.  I shouldn’t say “evil” because it is a powerful anti-inflammatory agent and the cornerstone of most treatment for auto-immune, allergic, or severe inflammatory conditions.  It is a life saver, given properly.  But every treatment is a compromise, and the side effects are what you pay for that life-saving ability.

One of the most vicious side effects of prednisone is that it increases appetite.  It doesn’t just increase appetite, it causes you to feel pressured to eat.  For many people, that pressure takes the form of wanting specific foods, things they don’t necessarily eat when their dose is lower or they are off the prednisone.  It seems that most people are pushed toward high-fat foods like cheese and meat, and toward foods that are high in sugar and simple carbs like pastries and cookies.  I Googled “prednisone and eating” this morning to see what other’s experiences have been, and was propelled into the second part of my two-mood morning.

One of the huge list of references I found really caught my eye.  Midwife with a Knife   at mwwak.blogspot.com/ is the two-year blog of a young woman who is completing a fellowship (extra training in a medical specialty) in maternal and fetal medicine and also dealing with newly-diagnosed ulcerative colitis.  That particular colon disease is an inflammatory, auto-immune disorder like lupus, and the first line of therapy is controlling the disease with prednisone.  The entry that came up on Google dealt with how prednisone was affecting her eating, but the parallels to my own life and memories dredged up and feelings evoked by it all kept me reading for more than an hour. 

I have been close to tears since I began reading about her situation.  Don’t get me wrong-she details her hectic, pressured training, the trials of her own illness, the interactions with her family (good and bad) all in a very matter of fact way, with no quest for sympathy.  Her tone is generally upbeat, and there is no hint of surrender to the pressures that she is under.  Indeed, there may even be some failure to realize how far from reasonable her situation is.  When you choose a life in medicine, you are choosing to make such extreme sacrifices that somewhere in your mind you have to readjust your perceptions of what is normal and human.  There is a good bit of cognitive dissonance involved in this readjustment.  If you have an illness that is best served by decreasing stress and living a healthier lifestyle, the validity of your career decision is tested daily. 

I left a kind comment for this young obstetrician .  What I wanted to say was “Pack up your forceps and stethoscope and run like hell!!!!”  I didn’t do that.  I pulled myself out of medicine one inch at a time, going from full-time private practice alone to full-time with a partner, then part-time, then part-time in a clinic setting, then part-time in an easier specialty, finally to retiring completely.  And though I say “completely” I still treat a few friends and family, still do more than the required continuing ed every year, maintain my license and DEA registration and pay my minimal malpractice insurance fees and state professional privilege tax (damn you, Tennessee!). 

This is what the cognitive dissonance is saying:  Essie my girl, you trained so hard, and worked so long, and invested so much of yourself in medicine that even though the lifestyle clearly was detrimental to your health, you must hang onto whatever piece of it you can manage.  What crap! 

Thank God for knitting.  Thank God for the chance to have a supremely creative existence.  That includes the drawing, painting, poetry-writing, mosaicing, cross-stitching, sewing, crocheting and everything else that is so active in my life now.  Did I skip piano-playing?  and bad singing?  and the two-minute dance with Ellen every morning?  My life is a breath of fresh air.  My life is no longer killing me.

So, wiping away the tears for that young woman and hoping the best for her, I am looking at today.  As promised, I finished the first strip in Dayna’s afghan.  I have to stop calling it a blanket, as it is intended to be about 36 inches x 52 inches.  To achieve this, I am casting on 48 stitches with size 4 US (3.5 mm) needles.  I am a fairly loose knitter, and I certainly am not going to sear my fingers by trying to tightly knit a substantial size cotton, but if you are a tighter knitter you will want a slightly larger needle, probably a 5 US.   The photo that I opened with shows one end of the first completed strip of the afghan.  The whole strip has four colour blocks, rose quartz, oatmeal, rose quartz, and persimmon.   Last night I laid out the strip with the remainder of my skeins of Cozy Cotton and figured out how I wanted the other two strips arranged.  You’ll see what I chose as we continue to work on this baby. 

daynasblanketseconddraft-002.jpgThis is the other end of that strip.  Don’t you love the bright punch of colour that the persimmon brings in?  daynasblanketseconddraft-003.jpgI think you can see now in this enlargement of the oat block that it has strips of seedstitch (knit 1 purl 1 through the entire row, knitting on the purls and purling on the knits) alternating with bands of double seed stitch (also called double moss stitch).  About.com has a lovely knitting stitch glossary for detailed explanations of how to achieve many of the common stitches at http://knitting.about.com/od/stitchglossary/Learn_to_Knit_Knitting_Stitch_Pattern_Glossary.htm

and I try to be consistent about using the names that they use there when I’m refering to them.   

daynasblanketseconddraft-004.jpgThis enlargement shows one end of the blanket strip.  You can see that I’ve chosen to put a few rows of garter stitch at the end-I just like the finished look it gives the piece.  In addition, there is a garter stitch border around this block consisting of four stitches at the beginning and end of each row.  Since I cast on 48 stitches, this leaves me 40 stitches to do the pattern I’ve chosen.  For this particular block I’ve chosen to make squares in two sizes.  The larger squares are 8 stitches x 10 rows, and the smaller squares are 4 stitches x 5 rows.  Remember that a stitch is wider than it is long, so you get a truer square by making the number of rows slightly more than the number of stitches. 

Whew!  Enough!  Gotta get an order ready to mail and contemplate dropping in at Yarn Works Inc for their open house.  Knit happy, people!

Okay, Maybe a Little Fluff

I just talked to my doctor’s office.  I’m scheduled for my first new treatment the day after Christmas.  Ooooh, ooooh, ooooh.  Those are for the anticipation, the trepidation, the unknown…I know it is less than three weeks away and I am impatient. 

Meanwhile, my current flare of lupus symptoms seems to be waning.  Even better, my prednisone dose has been decreased and I know from experience that some of the side effects (swelling, insomnia) will decrease very soon and some will take up to six weeks to go away (the round “moon” face, increased appetite, increased infections).  Just riding that ole lupus rollercoaster!

Yesterday one of my nieces turned 18.  She is a fabulous girl, smart and athletic, a freshman at Cornell, and I’m glad that she and I have forged a bond and stay in communication.  She’s one of my frequent IM partners.  Anyway, I have to say “Happy Birthday, Girl!!!!!” and remind her that I love her dearly. 

I can’t mention that this lupus flare is better without thanking my daughter one more time.  She has been incredible this fall, organizing the household, driving me around, accompanying me to the Chattanooga Market (http://chattanoogamarket.com/) where we sold stuff, making gorgeous handdrawn tags for my products, running errands when my legs don’t want to walk, and just being the wise, funny, quirky presence that she always has been.  I was diagnosed with lupus when she was 4.  She grew up with my uncertain health, learning that every so-called appointment was a “maybe”, leaning on our extended friend-family to fill in when her mom couldn’t, and finding entertainment and fulfillment in things that didn’t rely on physical prowess.  Love you, girl!

The blanket for my girl is coming along beautifully.  These are very soothing colours to knit, and I’m making very simple patterns. Dayna's blanket first viewDayna’s blanket first viewI threw it down on the deck and snapped a few photos to show you.  I’m making each block from a skein of the Cozy Cotton.  Above is the first two completed blocks and part of the third. Dayna’s blanket first view, closerIn this photo I’ve focused on the seam between the first two blocks.  When my yarn from the first skein was close to running out, I just switched yarns and started the second block.  Against popular teaching, I made the switch on the wrong side of the fabric so that the stitched edge would show up on the right side.  Sometimes I like the look of that contrasting stitching.  You can see the partial rib alternative pattern that I showed you 12/04 in the deep persimmon block, and the block pattern (8 stitches x 10 rows) on the light rose quartz block.  The third block, which is oatmeal coloured, alternates between several rows of seed stitch and several rows of 2×2 block.  It is gorgeous, but my photo didn’t have enough detail tocapture it.  I’ll show it next time.

Today’s goals are to finish the oatmeal block and add a fourth block to this strip of the blanket, post a few more completed scarves to my store (http://www.essiewb.etsy.com/), and run a few errands.  Oh yeah, and pay some bills. 

Peace!