Christmas Letter 2013

2013 – A Year of Changes

It’s that time of year again, and with it comes the annual reflection on the happenings of the family.  I did not send a letter last year, because I was sick on and off from November onward.  I thought I felt pretty well on Christmas Day, but my stomach was not as ready for turkey dinner as my mouth had been.  The first months of 2013 followed the same pattern:  a burst of energy followed by a bout of illness.  Blood tests showed I was in a flare-up of polymyositis, so high doses of prednisone were called on to bring it under control.

Life continued around me, of course.  Katrina became engaged to Tyler Young at the end of November 2012, so between second-year university courses and wedding plans, we were very busy.  Anthony began the Aircraft Maintenance program at Okanagan College and Bronson finished his grade 12 year with a high concentration of Math and Science courses.

By the time May rolled around, I was well enough to go back to work at O’Keefe Ranch, which I love so much!  My mom was apprehensive about my physical ability to handle the work, but I think the psychological benefit of doing what I love works wonders with my health.

June was the month for both Anthony and Bronson to go through their high school ceremonies.  I helped out with the after-grad, but kept out of their way (since we are apparently at the stage where parents are embarrassing to have around).  The bridal shower season began at the church (there were at least 7 weddings among church families this summer).  Katrina and I did wedding shopping and crossing things off lists on our days off.  Anthony and Bronson also received perfect attendance awards for Grade 12 and Anthony received the top award for Art.

Grad 2013 - Karen, Katrina, Anthony, Bronson, Marcel

July was proceeding nicely toward Katrina’s wedding on the 20^th – busy, but productive.  However, an unexpected fall at work left me with a fractured right femur five days before the wedding.  The wedding countdown changed for me, as I had surgery the next night, spent a day recovering from anaesthetic, practicing getting to the washroom with a walker and sitting upright in a chair.

July 20^th arrived and I was transported by wheelchair taxi to Mackie Lake House for the outdoor ceremony.  My sister, Shelley, made sure I was wheeled where I needed to be, since the boys were groomsmen and Marcel had “father of the bride” duties.  Katrina’s face lit up with joy when she saw that I had arrived.  But her face glowed as Marcel escorted her to her groom, Tyler.  We were blessed with a warm sunny day with a view of Kalamalka Lake behind the wedding party.  The reception reflected Katrina and Tyler’s love for the first meal of the day, with a “breakfast for dinner” buffet, topped off with cupcakes frosted with sunflowers.  I was whisked away by wheelchair taxi at 8:30 pm and returned to the hospital smiling, but exhausted.

Tyler and Katrina Young, Marcel,

Anthony, Karen, and Bronson

Two days later, I was back at home.  WorkSafe BC provided equipment to make things easier for me, as well as personal care workers until I was able to shower alone.  Marcel moved a single bed downstairs for me, so I feel like I am in the centre of most of the action of the household (or is that the eye of the hurricane?) and near everyone.  Mom came over daily and made breakfast for me – I was both blessed and spoiled.

Katrina finished work at the public library and Tyler at the music store at the end of the summer.  They moved to Surrey for school in September:  Katrina working toward her goal of becoming a French teacher at SFU and Tyler studying toward a degree in worship music at Pacific Life Bible College.  They have a basement suite furnished with their lovely wedding gifts.  Katrina is also working part-time as a tutor.

Anthony continued his Aircraft Maintenance course this fall.  He is finding it quite intense. The minimum passing grade is 70%, so we get on his case when he comes home with a grade in the low 90s.  “What?  93%?  You better pull up your socks, boy!”  Seriously, he is doing very well.  In March 2014 he will complete the program with a few months at Northern Lights College in Dawson Creek.  He hopes to work on helicopters after graduation. 

Bronson began his UBC-O studies in September, with English, History, Physics, Calculus, and Computer Programming.  His goal is computer programming.  He is finding the workload heavy, but was well-prepared for the math and science courses by his grade 12 high school teachers.  Having a mom who majored in English and History is also somewhat helpful.

Both boys (are they still boys?  18 year old males.  Sons.) are still working on weekends at Tolko’s White Valley division, doing clean up and fire watch.  They have both been able to buy (used) cars and are enjoying the independence an N license gives them.  We were very proud that each of them earned a bursary from the Steelworkers Union this fall.  Marcel also works weekends as a millwright at this plant and has worked quite a few overtime hours this year, while still finding time for a fishing trip most weeks during spring and summer.

While I was unable to climb stairs for a time, I resumed knitting and produced outfits for the baby showers for new moms at our church.  Once I had learned to navigate stairs with crutches, I got back to the sewing machine and finished projects for bridal shower gifts.  Our quilting group resumed in the fall, and I was thrilled to be able to attend the quilting retreat put on by ladies from our church.  Quilting, knitting, and a round of appointments with doctors make up much of my life.  I am going to have further surgery because the bone growth needs to be stimulated. 

So that’s my story for 2013 and I’m sticking to it.  Wishing you a blessed and peaceful Christmas season with those you love.

Pleasures and Treasures in Leisure

It occurred to me as I was browsing through Sunday's paper that I hadn't been hunting for work for a while.  Normally I would still be at work at O'Keefe Ranch, and in years prior to that job, it would be a "waiting for the phone to ring" month in September, as teachers usually don't get sick in the first week or two of school.  (Except the year that I taught the first week of Socials 8 and Western Civilization 11.)  Since I am being supported in the manner to which I have become accustomed by WorkSafe, I guess looking or waiting for work is legitimately on hold until I am declared mobile, or ready and able.

So, being the lady of leisure that I am, spoiled and pampered by everyone except the inhabitants of my house, I enjoyed a lovely 4 or so hours yesterday at the first day back to quilting at our church.  I did have to repeat the story of my fall, injury, hospital stay, daughter's wedding, and prognosis a few times, but it was great to be back with the quilting ladies again.

Four hours of quilting seriously wears me out.  I went home and napped for an hour or two.  Definitely not up to full-time work yet.

Today, I missed my care aide ... as in, no one came.  At 11 am, I decided I might as well get dressed and brush my teeth on my own which I managed quite well.  Then I had another nap.  I'm sure getting dressed on my own wasn't that exhausting, but there really wasn't much else going on, except the man of the house getting ready to go fishing.  Thump, thump, thump, "where's the ---?" thump, thump.  Etc.

By the time the fisherman departed, I was hungry for lunch and warmed up some leftovers.  Called up my partner in crime (aka: mother) and we went on an adventure to the upstairs of my house.  Stairs are still fairly complex when I am only supposed to be putting feather-weight on my right leg.  The backward- butt-shuffle seems to work.  Sit on the second step from the main floor, lift up with arms (need longer arms!) and left leg and shuffle the butt up to the third step.  Repeat, repeat until the corner at the landing, which is a little more complicated. Then up up up to the top and haul myself up with the aid of the walker and the handrail. Goal: our "playroom."  That is what we called the "bonus room" from our floor plans, which is a large room over our double garage. No one has played there for awhile, and it has accumulated a fair bit of stuff, junk, and stored items, which may or may not be treasure.  One man's junk is another man's treasure, it has been said.

For some, a couple piles of jeans which no one wears anymore might be junk.  But for me, they are treasure, because denim can be made into ragtime quilts
 or personalized pillows.

Long pause there, as I searched for images on Google of personalized denim pillows the way I make them.  Then another long pause as I searched through my own photos.

2013

2004

I had ventured up the stairs alone on Saturday, starting a set of pillows for my cousin and his new bride ... continued them at quilting, and finished them today.  Actually, they also went home with my partner-in-crime, who ran them through her washer and dryer to fluff up the edges.  Since 2004, I started making them more like a rag-time quilt around the edges.

Back to the treasures ... another treasure discovered by my mom was fabric that I think must have come from my aunt Rose, which I didn't really value (because it was autumn colours) but she prevented me from cutting up because it was actually very good quality fabric. We had quite a good time up there, sorting through fabric and tidying up other things in this dumping ground.

Later on, we were making supper (okay, I was directing the supper prep) and I wandered with walker into the dining room.  Lo and behold, I discovered a knitting pattern book on a shelf unit dividing living room from dining room.  And not just any knitting pattern book, it was the one I needed to finish a baby outfit which I had started several years ago.  (The baby has since been born and has a baby brother, so it might be a gift for one of their cousins who will be born in a few months).  I was happy as 

     ... a pig in mud

     ... the woman in the Bible who had lost a coin and searched the whole house until she found it.

Shortly after I got home from the hospital, when I wasn't able to get off the main floor, my mom found this partially knitted outfit and I have been racking my memory for where the pattern could possibly be.

So I just had to blog about my leisure day, with denim pleasure, and knitting pattern treasure.  Hope you enjoyed your day as much as I did mine.

How are you doing?

I'm not sure what you mean.

I'm home from the hospital, in a room on the main floor of our house, near the kitchen and bathroom.  It's actually the computer room, so between the computer and my tablet, I am kept entertained.

I have a variety of entertaining equipment ... a commode (for the first few days it was hard to get to the bathroom at night ... a walker (a necessity when one is non-weight-bearing or "feather weight" as I am now) ... crutches (not using yet.  Too wobbly) ... a wheelchair (handy for outings but hard to fold up and put in the car, at least for me) ... a comfy cushion to make our TV room chair a little higher ... a raised toilet seat, grab bar and bath seat make the bathroom more manageable ... and a swivel cushion which helps me turn in and out of the seat in the car.  Oh, and I have a grabby thing (stick for picking things up).

I am progressing ... from  non-weight-bearing to "feather weight" in my walker.  I feel a little like a toddler sometimes ... I can mostly dress myself.  I have care aides who come and help me shower and dress.  I can now sit or lie on the couch to watch TV and get up again.  I suspect my left leg is getting much stronger than it used to be.

......

I found this blog-bit that I had started, after finishing a big long one today about all of my adventures at home this past month.  So, two blogs in one day might be overkill, but this really was started last week as I was musing about all the questions that are hard to answer.

"How are you doing?"  (How do I look like I'm doing?)

"What does the doctor say?"  (As little as possible)

"Are you healing up?"  (No idea, as the doctor prefers to say as little as possible)

"You must be in a lot of pain." (No, I'm not.  And that wasn't really a question, it was more of a false assumption)

What do you say to a friend or acquaintance with a walker or in a wheelchair?  "You're looking great today!"  Or my favorite, coming from someone who saw me cruising WalMart on an electric scooter:  "You look like the happiest person I've seen riding one of those!"  Music to my ears ... I'd rather be the happiest person than the most depressed grumpy one.

Over and out.

Ups and downs

Well, I thought I had started a blog and saved it (a few days back) but do you think I can find it?  Me neither.  So I'll check the Facebook statuses (stati?) and see what life has been like.  I have a good memory, but it's short.  Like me.

July 22:  Home. Air conditioning. Left over wedding cupcakes. But it is a lot farther to the bathroom, and no one is bringing me my meds on schedule. No one in the other bed with any symptoms I have to listen to, however. There are pros and cons but I think being home means I am closer to recovery. Big plus.

July 23:  Slept like a log last night. Home sweet home.

Not sure how a log sleeps ... presumably without waking or moving.

July 25:  Well, one can accomplish many things while recuperating from falling and breaking a leg. First you need helpful minions ... Mine likes to dust, so we've been discarding, rearranging, and tidying the top shelf of my office/bedroom. Then I was looking for receipts, so I was sorting through my filing drawer in my desk. Stuffed peppers and Greek potatoes for supper were yummy, and a delish cupcake leftover from the wedding. Air conditioning still rocks!

This dusting and so on has continued on and off, and I just finished clearing off all the dust bunnies that have been holding a convention on the top of my desk behind the computer.  Apparently, dust bunnies are attracted by the electricity from the computer and love to hide among all those computer wires.

July 30: A little bored at 2:38 am...wish I could fall asleep at night.

This past month has been a little stressful, tired and napping during the daytime, then lying awake a lot of the night.  I talked to my doctor about it this past week and I'm benefiting from taking Melatonin at bedtime.

Serious problem here... I am out of cookies. Entertaining ride to and from the drs office today in the wheelchair cab. He had 20 customers today, most in wheelchairs. It is a good thing we got right in at the doctor's office...wheelchair took up most of the waiting room!

That was my first trip to the doctor's office.  I am now navigating the world with my walker, for the most part, as long as I don't have to walk too far.  My cookie cravings were met with great satisfaction by a couple of cookie angels, otherwise known as friends of mine.  With chocolate chips.

August 4:  Had fun today copying photos from FB and making my own slide show to run on the computer. If one is going to be laid up, and can't scrapbook, at least one can get creative in the computer room (my new bedroom, temporarily).

This was also my 29th wedding anniversary, but the logistics of doing anything like going out to dinner with a wheelchair after my husband's arrival home from work at 6:30 pm, defeated any hope of such an event taking place.  Playing with my daughter's wedding photos was much fun.

August 11:  Hooray ... I made it to church today! And had a 2 hour nap in the afternoon.

This was via my mother's car and a walker.  And the whole adventure definitely required a nap afterward.  It was good to see people in my church family again.  They have been so good to us, bringing meals, flowers, cards, and so on, as well as phoning and e-mailing encouragement.

August 12:  Feeling totally blessed...shower bench arrived today from the medical supplies company, ladies from our Bible study brought a bounty of vegetables, baking, snacks, and stayed for a visit. And my mom brought a quilt over for me to do the hand stitching on the binding.

I think my vanished blog had something to do with the amount of equipment that WorkSafe has provided for my recovery.  I know many people have had bad experiences with this organization, but so far, I have had a lot of people on my side, checking to see how I am doing, making sure that I have what I need.  I haven't tried the crutches yet, feeling that their instability combined with my own might not be a good combination.

August 17: Apparently I am not Superwoman! It is not possible to have 5 hours of sleep at night and then go to a wedding and the grocery store without having an afternoon rest. And peach pie. Trying not to sleep now so I CAN sleep tonight. For anyone who is not recovering from a broken femur, that doesn't sound like a hard day, but I am doing all this with a walker, hopping on my left foot.

This business of hopping on the left foot is very exhausting, even when I am allowed to put "feather-weight" on the right foot.  I was trying to describe it as playing hopscotch on the wrong foot.  It only makes sense to people who have played hopscotch, however.  I am right-footed as well as right-handed, and can't stand on my left foot for very long at all.  Having to depend on it to get me around is a bit of a pain.  "Pain" in this case means inconvenience, as I also seem to have to correct everyone's idea that I must be in a lot of physical pain because of the broken leg (femur).  I am not, actually, as I take extra-strength Tylenol a couple times in the daytime (as I have for years) and T-3s at night, so any pain that decides to sneak up on me is dealt with before it gets out of control.

August 19:  Life is an adventure. Yesterday my twins turned 18, so I went on an adventure at Walmart to buy birthday cards. I got to ride on an electric scooter. Too much fun! Out for a family dinner in Kelowna and got to ride on the new stretch of highway 97. Today's adventures included counting offering at church, getting a filling at the dentist, a much needed nap, then at suppertime, a fire at the landfill that brought us a great view of the helicopters refilling with water, smoke, flames, and planes dropping fire retardant. Oh, and the newlyweds were over, and we had other friends drop on to watch the fire from our vantage point.

Part of keeping a positive outlook is keeping an adventurous spirit.  Instead of moping around the house, bound by what I can't do, I look forward to trying my limits.  And the electric scooter at WalMart was a blast!  It fits into my ever-evolving mental picture of what I will be like as an "older" person.  When I was diagnosed with polymyositis, I pictured myself needing a wheelchair by this stage in life (27 years later), since most of the documented cases at that time were women after menopause.  When I was diagnosed with pulmonary fibrosis, I was on oxygen overnight for quite a period of months.  So I added an oxygen tank to my mental picture.  Then I was diagnosed with pulmonary hypertension.  The treatment I have been having involves a medication used for males with erectile disfunction.  So now, the mental picture is of me, in my motorized wheelchair, rocketing down the street with my oxygen tanks, staying ahead of a bunch of little old men wanting my Viagra.

August 22:  Suffering from a lack of a small crochet hook to put together a sweater made of baby wool.

Once I finished sewing the binding on the quilt (Aug 12 - done in 2 days),  I began looking around for other projects to work on.  However, there are a couple of problems. First, everything is upstairs and I am downstairs.  Second, anything that was on the main floor has gotten caught up in the whirlwind of cleaning up and arranging a room for me down here.  So I don't know where the pattern is for the sweater set that I started 4 years ago, and I can't find the little hook that I always use to tuck in the ends of the wool where I join a new ball. Where oh where are you, little hook?  Playing hooky??

August 23:  Climbed a mountain today ... actually a stairway, in reverse, seated. The butt shuffle was much easier on the ground. I had a four-year-old showing me the technique on the way down.

So, this is how to get to lunch at my mother's, just across the street.  First, the wonderful mother picks me up and drives me across the street.  I navigate into the house with the walker and sit down two steps up from the basement floor. Lifting my body with the strength of my left foot and leg, I balance with my right foot, and raise myself one step.  Stop, rest, repeat.  At the landing, I cling to the strong post to turn around for the second half of the stairs.  Two steps up, sit, *lift, raise self, stop, rest*, repeat.  It's like a knitting pattern:  repeat from * to * until the top of the stairs is reached, then cling to the top of the stairway railing, the post and the walker until balance is achieved.  Goal:  Lunch.  Achieved.  Also a lovely visit with a cousin and her 4 year old son, who accompanied me on the reverse journey, sliding down the stairs.  The son, not the cousin.

And that brings us to today, when I attended another wedding.  I was a little miffed at the ushers, who were under orders not to let the guests through the centre aisle, so I had to go to the side door, and hop sideways down the length of the 10 or so seats at the back of the church to get to a seat that was probably 3 or 4 walker hops from the ushers' position.  For heaven's sake, I wasn't going to mess up the pretty decorated aisle!  Sigh.  And this is just with a broken leg.  I can only imagine what people who are disabled have to put up with as they go about their daily lives!

So there are ups and adventures and downs and disappointments in this new, but hopefully temporary, reality of mine.  Signing off for tonight.

Wedding day

    July 20, 2013 was a normal day for everyone else, I suppose.  At our house, there was a flurry of activity related to Katrina's wedding.  I was in hospital, practicing physiotherapy exercises in the morning, then my hairdresser came by and turned a greasy mess into a lovely updo.  There was lots of excitement during lunch as well, as a new patient came from surgery and became a wild animal, pulling out tubes, spitting at the nurses, and calling for her mommy and daddy (she was a dementia patient from one of the local seniors care homes, who fell and broke her hip).  I just continued munching my lunch with this new entertainment.  One of the nurses helped me dress, my sister came up and wheeled me down to my wheelchair taxi, and we were off to Mackie Lake House.

Needless to say, Katrina was happy to see me.  What a beautiful bride.

Soon it was time to wheel into position, so my sister/nurse was on duty again.

The guys came in first, and I was very proud of Anthony and Bronson, looking very nice all dressed up.

The groom, Tyler, was awaiting his first look at Katrina.

And there she was.

From then on, everything proceeded as a normal wedding.  Except the groom was miked, so we also overheard snippets of their conversation ("I love you."  "I love you.")

How many pictures can we take of them kissing?  Lots, apparently.

And then they ran away.

Time for photos of family and wedding party.

I had about an hour's break in the air conditioning at home, before heading out to the reception...

...where we laughed, ate "breakfast for dinner", made speeches, cut cake, and soon it was time for me to return to my pumpkin taxi and return to the hospital.

A beautiful day, a beautiful couple.  And I was exhausted.

If a tree falls in the forest ...

     Well, I'm not a tree and I didn't fall in the forest.  I was closing up buildings last Monday (July 15) and walking down the boardwalk from St. Ann's Church, I caught my toe on a board and down I toppled.  What thoughts went through my mind as I fell, I am not too sure.  I seem to have had the presence of mind not to catch myself with my hands, so I avoided breaking my wrists.  I landed on my right side, and managed to break my right femur very high up, but as I was lying on my side, my body sort of splinted things and I didn't feel any pain.  Not right away, anyway.
     I was carrying a walkie-talkie with me, so I radioed back to the front desk and my rescuers quickly began to arrive.  The first gave me a quick first-aid checkover, then called for the ambulance and called my husband.  The rest provided varying degrees of sympathy until the ambulance arrived.  I think I was more afraid of them being upset by my tumble, but I sure didn't feel like driving home.
     The ambulance arrived, and then the fun began.  They decided the best way to move me was as I lay, so they fitted a clamshell around me, lying on my side, and lifted me into the ambulance.  They buckled me in and gave me nitrous oxide (laughing gas ... marvellous stuff!!) and away we went to Emergency.  I didn't appear to be much of an Emergency until I started listing off all my illnesses .... polymyositis, pulmonary fibrosis, pulmonary hypertension, and of course, I had to explain the peripheral neuropathy every time they asked whether there was numbness or tingling in my feet.  So I got bumped ahead in the line for X-ray and pretty soon the ambulance attendants were "not telling me" that I had broken my right femur, right up near my hip.  Which I suppose could be worse.  At some point in the next 24 hours (without food, might I add!!), I also heard that I wouldn't be mobile for about 12 weeks ... which I quickly calculated to be near the end of the O'Keefe ranch season.  I think I cried then.
     Family members appeared and disappeared.  I think they gave me morphine (the hospital, not the family members) until they could get me into surgery.  Which apparently took 4 hours instead of 2. The worst part was when the anesthesiologist said he wanted to do a spinal anesthetic and I was really scared of the pain that would cause ... however, he must have convinced me and gave me something strong very quickly because I don't remember feeling a thing.
     And then it was Wednesday morning and I was waking up in a hospital bed, listening to the man across the way chatting about his prostate surgery and his urine output.  I'm not sure what bright light saw fit to give me orange juice and oatmeal when I had just gotten out of surgery, but the combination of the conversation, the coffee smell, and the food caused a violent upheaval and I ended up wearing the orange juice/oatmeal combination.  I didn't have much appetite for lunch either, and only had a bit of supper.
     Thursday was better, but then physio caught on to the idea that I was the mother of the bride and expected to be at my daughter's wedding on Saturday.  I only had about half a night's sleep, and every time my nursing student wanted me to get up and sit in a chair or wheelchair, all I wanted to do was nap.  I was managing to use a walker to get to the washroom, only about 6 steps away from my bed, but I was keeping a close eye on the call button in case I toppled again.
     Friday, I got my favourite cinnamon spread and some dry toast for breakfast.  Prostate man went home and was replaced by a woman.  I hadn't had much more sleep, but I was more comfortable getting in and out of bed.  I think the fears that I wouldn't make it to the wedding eased a bit -- my husband made arrangements for the wheelchair taxi to pick me up on Saturday.  I did feel a little lonely on Friday night, with the rehearsal and rehearsal dinner going on without me.  But my sons came by and had recorded the rehearsal so I didn't feel totally out of the loop.  I had been having visitors all week from work, from the church, my family, my daughter's future in-laws, Facebook friends, and other friends who work in various capacities on the hospital staff.
      I think I will leave you in suspense about Saturday.  You see, my leg starts to hurt when I sit up for extended periods of time ... so I will try to make it back here tomorrow.

Losing it

Losing it can be quite amusing ... as long as you aren't losing your temper.

I may be losing my hearing ... but I hear the most interesting things that no one ever said or meant to say. (Apparently, no one has left "birthday trolls" around the kitchen)

I may be losing more of my eyesight ... Andre's Appliance Bucks in the newspaper ad looked to me like Andre's Appliance Sucks.  (Maybe so and maybe no)

Of all the things I've lost, I miss my mind the most.   Actually, I don't ... I walk past the chicken pens at O'Keefe Ranch and sing to the chickens ("Chick, chick, chick, chick, chicken, lay a little egg for me."), talk to the geese (they were complaining there were too many ducks in their pond), squawk at the peacock, chat with the sheep and lambs ... you get the picture.  I also told the flies in the ladies washroom on Monday that this was a "no fly zone" ... they paid no attention, so I washed them down the drain.

I don't want to lose my voice, since my job requires a fair bit of talking.  And I really don't want lose control of my bodily functions ('nuff said ... it's not funny).

Losing it can have its ups and downs.  Losing sensation in my feet creates a whole new tripping problem (as if tripping over nothing wasn't bad enough, now I can't even feel the nothing I have tripped over!!) and creates an odd dichotomy.  My nerves are telling me that my feet are cold, yet if I touch them with my hand, they feel warm.  Is it because my feet are stiff that my nerves think they are cold?  Or is it because it is so hot in our house that I have lost touch with temperature reality.

Just a few of the questions that losing it brings to my mind.  The mind I lost.  Along with my favorite belt.

And if I am losing so many things, why isn't weight easier to lose?

A little bit of this and a little bit of that ...

Once again inspired by reading other people's blogs, I trot myself over to the computer keyboard to compose an update on this life of mine.  It's a long weekend with Monday celebrating Queen Victoria's birthday and the school kids in our area also had a Pro-D day off Friday.  Two of my three offspring are away at Sunnybrae Bible Camp enjoying (I hope) a huge youth May Camp event.  So the house is pretty quiet.

The countdown on prednisone continues:  I started with 10 pills per day (50 mg) on May 3, reduced to 6 on May 8, reduced again to 4 on May 13, and went down to 3 today.  The initial "high" was great, but it is good to get down from that dosage as soon as possible.  I'll get blood tests done this week and see how the muscle enzymes are taking this onslaught of steroids!

It was a steady day at the Historic O'Keefe Ranch today.  I was on duty in the gift shop all day, and the two other interpreters divided duties between mansion tours and general store-keeping.  We also had a wedding going on in the afternoon (as well as a rehearsal for another wedding tomorrow) so there were people all over the place.  I did manage to keep ranch guests paying and wedding guests free, so they all got what they came for.  Being on the front desk is a bit nerve-racking, especially when I messed up the first transaction of the day and then couldn't "void" it out of the till properly.  Well, I'm sure I will hear about it when the bookkeeper is back in after the long weekend.  Then there were the times when I rang in a credit or debit card transaction as cash ... or debit as credit ... well, I'm sure it wasn't this complicated last year.

I did miss doing tours today, especially the families with children.  I love making history come alive for ranch visitors.  But it is handy to know as much as I do about the ranch, because even people in the gift shop have questions, and I was able to answer a few today.

Well, that is all the excitement for now ... I thought I was in a much more reflective mood.  Just enjoying my blessings today.

A day for mothers

Today was Mother's Day in Canada and it was a busy one for me.  Instead of lying in bed, being pampered, getting breakfast in bed and all that fun stuff, I was up and about, taking my normal round of medications, making myself french toast with cinnamon spread (yum) and getting ready for work.  I'm not complaining -- I love my job at O'Keefe Ranch.  And my 3 men were off to work at the mill an hour before I had to wake up for my first medication, so I didn't have to do anything for them.

The day was overcast and threatened us with grey clouds and little spits of raindrops.  Between 10 and 11 am, I'm not sure that we were hopeful of a busy day, but we were ready for the guests to arrive.  The first mansion tour was at 11 am, and I had the next tour at 12 noon.  After that, there were fully packed tours (15-20 people) every half hour until the last one at 4:30 pm.  I had my bite of lunch and then went to help out at the admissions desk ... people were lined up from the desk to the door  for an hour or so!  I folded maps, helped people pay for coffee and pottery purchases, and tried to be helpful without being underfoot.  What an amazing rush of people!  Of course, it helped that mothers, grandmothers, and preschoolers got in free!!

My favorite part of the day is giving tours of the mansion, and it was fun to reflect on the mothers who had been part of the O'Keefe story.  From Cornelius O'Keefe's mother in Ontario, who said goodbye to her adventurous son as he left to seek his fortune on the BC goldfields, to Alapetsa who bore his first two children, Mary Ann who joined him in pioneering the cattle ranch and giving birth to nine children, and Elizabeth who married Cornelius after Mary Ann's death and gave him another six children ... then on to Betty who married Cornelius and Elizabeth's son Tierney, raised 5 children with him, and had the bold and wonderful idea of turning the ranch and its story into a public historic attraction -- thank you ladies!

Everyone seemed happy today, despite the grey skies ... the kids were enjoying the animals (especially the new lambs) and their trips to the general store for candy.  I loved watching a couple little kids swaying to the music of the Treble Tones on the steps of the gazebo.  I had fun cruising the vendors booths and made a few purchases for upcoming events.  We had so many faithful volunteers manning (and womanning) the activities for children ... painting birdhouses, colouring, making beaded bracelets, taking Mother's Day photos ... the list goes on.  Wagon tours and stagecoach rides were a big attraction too.  And then, suddenly the day was done and we were taking down everything that had been put up and saying goodbye to our guests.

Home again, home again, jiggedy jig.  I stopped at Safeway and bought supper ... 2/3 of my children were home and my husband arrived while we were consuming the barbecued chicken and fixings.  I received a lovely PVC quilting floor frame for my Mother's Day gift (yes, I had hinted very loudly for it, some weeks ago, but had no idea that the hint had been taken!)  I'm not sure when I'll have time to use it (probably not until the fall of this year, with all the other things I have to get to and through).  But it is very nice and I am going to enjoy it for years!

Tired feet.  Wakeful brain.  Maybe if I soak my feet ... or my head (?) ... I'll settle down.  Maybe not. 

Where did the last two months go?

I appear to have missed much of March and lost all of April.  Have you been watching this space?  Oh, you noticed I wasn't blogging at all.  Can't slip anything past you, can I?

So last update, I was tired and waiting for news when to start the new medication, Mycophenolate mofeti, the generic version of Cellcept.  I started using it and but hadn't noticed much change, read the directions again, and reaffirmed that it had to be take on an empty stomach.  This really messes up my life, because I tend to graze in a rather unhealthy way.  So "take on an empty stomach" means taking it at 6 am and not having anything to eat until 7 am, while I am preparing lunches for my offspring, making tea, and so on.  The morning installment isn't too bad, but it seems that the evening tends to stretch on.  I was trying to take the Cellcept 2 hours after supper and then waiting another hour after that to take the final round of my other meds, but somehow a snack sneaked in and messed that up.  So I decided to take the final round of meds at 9 pm, wait 2 hours until 11 pm for the Cellcept and then have that just before bedtime.

In a perfectly regulated world, that would work just fine.  However, if I have dinner late, snack later, and don't get those meds taken at 9 pm, everything tends to run later than that.  Last night I got lost watching an old remake of Shakespeare's "Tempest" on TV.  I wondered whether it was the one I was planning to use in my student teaching practicum in 1983, but realized that it was way too different from the text to be that one ... plus there was a fair bit of gratuitous nudity (male and female) which I would never (then or now) show to a high school class.  By the time I got to bed, it was after 1 am, and I lay there and lay there and rolled over ... it was hot and I was not sleepy.

When I got up this morning at 6 am, I took my Cellcept and went back to bed.  I was supposed to take my weekly Fosavance (helps with maintaining calcium in my bones) 2 hours after that, but in my sleep-fogged state, I took another dose of Cellcept.  Brilliant!  I continued my morning routine, which included more meds and breakfast, then tried to put my hair up in French braids before church.  The back was quite nice, but all the front all fell down from the braids.  So I went with hair down and probably scared everyone.  When I came home after church, I redid the "do" and it turned out quite nicely.  

The other medication that is complicating life as we know it is Prednisone.  The latest blood work showed a muscle enzyme level that had risen to more than 3500 ... probably the worst in my memory.  So I talked to the doctor and the doctor left a note for my regular GP to contact the rheumatologist in Kelowna, and that probably took a week to get sorted out.  Back to the major doses of Prednisone for me ... 50 mg (10 pills) per day for a few days to hit the flare-up and knock it down, then reducing the dosage regularly.  Blood tests in two weeks to see how things are going.  

Of course, my kids have never seen me on megadoses of Prednisone before, and after the first day or two, they were actually quite impressed.  Instead of lying on the couch avoiding the inevitable torture of preparing supper for several implacable appetites, I had a plan and ingredients and supper cooking yesterday evening ... and even had it ready by 6:05 pm!  Today was a little messed up though, as there was a pack of girls in the house, and the boys went out to eat with other friends of theirs, so I didn't have to be quite as ambitious (husband was content with perogies and weiners, and a little peace and quiet).

The difference in energy with the increase in prednisone is quite amazing.  This week I managed to do 3 days of teaching ... actually two half days and one full day, but it did mean that I drove out to Lumby three days in a row.  Saturday, I managed to run errands, attend a board meeting, followed by a memorial service, and a few more errands, then came home for lunch and a bit of a lie-down before the arrival of the boys from work ... and the start of my supper preparations.  A week or so ago that much activity would have had me couch-bound and complaining.  I do have to watch that I don't do too much, because this false energy is not backed up with any muscle strength, so I can really do myself some damage if I'm not careful.  (Don't want to be back in physiotherapy again!)

Well, tomorrow is another day ... and I'll be back to work at the Historic O'Keefe Ranch, just outside Vernon.  We officially open on Mother's Day (Sunday) but there are school tours beginning this week, and apparently there is work for me to do tomorrow.  Fun fun fun.  I am looking forward to it.  This will be my third season, and I am still saying that this is the best job I've ever had.

Lady in waiting

     So much for my resolution to blog more faithfully ... I'm either too busy, too sick, or too tired.
     I spent yesterday at home on the couch.  I seem to be nauseated in the morning (no, my faithful fans, I am not pregnant.  That ship sailed a long time ago) and once everyone had left the house for school, I lay down and shivered under my quilt.  My dear husband made up a nice hot water bottle for me before leaving for his daily pursuit.  I watched a little TV, played games on my Tablet, and shivered until I warmed up.  Also I answered phone calls.  My rheumatologist's office in Kelowna called with the information that he was going to prescribe a new medication for me (Cellcept) but was getting permission to prescribe it from Pharmacare. Then the plan of action was for them to call my pharmacy with the prescription.  Well, that was a load off my mind, because I have been sick and tired for too long.  My last two blood tests showed elevated muscle enzymes (1000+ on the first test and over 2000 on the one a couple weeks later) so some sort of treatment was definitely in order.
    By the end of the day, I hadn't heard whether the prescription had been sent to my pharmacy, so I phoned the doctor's office and got their answering service (they were already gone for the day) and then the pharmacy (no, there were no new prescriptions for me today).  So I remain waiting as I have been for several weeks, but with a little more information about what will happen.  Perhaps tomorrow, because the doctor's office is also closed on Wednesdays!!
     Today, I got a call to substitute teach so I flew around the house, taking meds, eating toast, getting dressed, saying goodbye to departing children, and dashing out the door to school.  I knew the world wasn't going to end if I wasn't precisely on time, because I was the librarian for the morning.  Lovely ... reading to kids and listening to kids read in small groups.  In the afternoon, I became a Math and PE teacher (never was this one of my ambitions).  The kids were doing a practice test in Math, and every time I had my head down helping one student, about 6 others popped up and wandered around the classroom.   They were quiet when I asked them to be quiet, but as soon as it was 'back to work' they were noisy and disorderly again.  Sigh.  PE time ... 6 girls were missing on the way from the class to the gym.  I went in search of them while the rest of the kids were 'warming up' and apparently they were solving some problem of hurt feelings. I had to give them some information, and then went back to the gym and was just getting the teams lined up for Dr Dodgeball when the fire alarm went off (Yes, it was a planned fire drill, so I had my evacuation folder with me)  and they lined up noisily and proceeded outside to repeated shushing from me.  They lined up in the gathering area with many complaints about being outside in their PE strip (it was snowing).  I finally got them quiet enough to call their names and ascertain that they all indeed were present and not burning to death in the school, which was not on fire.  Back to PE, divided the class into teams, and they had about 10 minutes left to play ... not enough time to get bored ... then it was home time.  Oh, first I had to deal with a boy in the change-room who apparently was pulling his shorts and underwear off (on purpose) ... I told the kid who reported it to get the principal.  Do I want any furor about my being in the boys' change-room?  No, I do not.  The principal was there in a jiffy and dealt with the kid, so I went back to the class and stamped everyone's agenda before departure.
     Back home again, my son asks "Mom, can I have some tea?"  My response is "can I have some too?"  Everything looks better with a nice cup of tea.

Medication and memory

I would post a photo of my medicine cabinet ... but that would mean everyone in the world (or my 3 followers) would know what I was "on".  A few years back, when we travelled to DisneyWorld, my mother was amazed at how many bottles of pills I had to cart with me (I think it was 13 prescription meds plus vitamins, minerals, etc).  Anyhow, I am down somewhat from that.  I counted about 10 prescription bottles this morning.

So I have this problem every morning.  After about the 3rd or 4th bottle, I can't remember what I've taken.  Yes, they are in the same order every day.  But somehow, my mind skips and I cannot remember taking the one-a-day vitamin for women over 50.  Maybe they should add a memory helper to the multivitamin.  Maybe they did and it works the opposite way on me.  However ... I can either blame it on the pill that comes before or the prednisone that comes afterward.  Not going to tell you about the pill before, except that it is blue and makes me laugh.

So it must be prednisone's fault.  Everything is the fault of prednisone.  For example, Wikipedia lists these as the major side effects:

• Increased blood sugar for diabetics
• Difficulty controlling emotion
• Difficulty in maintaining train of thought
• Weight gain
• Facial swelling
• Depression, mania, psychosis, or other psychiatric symptoms
• Unusual fatigue or weakness
• Mental confusion / indecisiveness
• Blurred vision
• Abdominal pain
• Peptic ulcer
• Infections
• Painful hips or shoulders
• Steroid-induced osteoporosis
• Stretch marks
• Osteonecrosis
• Insomnia
• Severe joint pain
• Cataracts or glaucoma
• Anxiety
• Black stool
• Stomach pain or bloating
• Severe swelling
• Mouth sores or dry mouth
• Avascular necrosis
• Hepatic steatosis

Of course, I don't have all of these side effects.   Many of them I can't even pronounce and most of them I don't have at the moment.  But when I was on high doses back in the 1980s, I had many of them ... and some of them persist even on a relatively low dose (7.5 mg/daily).

Oh, look ... there's mental confusion ... does that count as memory loss?  Or maybe that is just the difficulty in maintaining train of thought.  I'm still waiting to hear from my doctor whether I have an infection or not ... perhaps I'll remember to give him a call tomorrow.  If prednisone doesn't make me forget.

When you look at the side effects of a drug, it's a wonder that any of us are brave enough to take a prescription to the pharmacy!  I have to laugh at the commercials on television where the visuals are all lovely and beautiful scenes with happy people and the audio voice-over reads an endless list of side effects and "do not take 'X' if you have fill-in-the-blank-with-any-condition".  I am actually quite friendly with most of the staff at my pharmacy, since they have filled and refilled many of the same things for me for years.  (It's like going to the Cheers bar -- "you want to go where everyone knows your name.")  But once in awhile, it's a good thing to check that list of side effects, even if the medication has been refilled for years.  Maybe you are taking one pill to counteract the side effect of another pill that you stopped taking ... so then you get the side effects of that pill for no reason at all.

Time for sleep.  I don't have a pill for that.  But I will go visit the medicine cabinet.

Happy Feet

I had to re-read my previous posts, as I have not been very faithful at blogging on any regular basis.  However, I am inspired to begin again by two bloggers who I have been reading lately.  The first is Frank, who lives in Portsmouth, UK and has dermatomyositis ... I discovered his blog while checking up on one of the Myositis groups on Facebook.  Dermatomyositis is one of 4 kinds of Myositis and I have polymyositis.  Dermato involves the skin more in its flare-ups and polymyositis means many (poly) muscles (myo) inflammation (itis).  The other blogger is Chris who lives in Winnipeg, in Canada and has scleroderma plus myositis.  Though they are both quite different people from me, they inspire me with their ability to blog on a regular basis, to survive through diseases and treatments, and to maintain their respective sense(s) of humour.

I've entitled this "Happy Feet" because my feet have been very unhappy for quite a while, and today they were totally pampered.  When I started working at O'Keefe Ranch in August 2011, I wore a rather new pair of shoes and immediately developed a black big toenail on my right foot.  Needless to say, I changed to an older pair of shoes which kept any more black nails from developing.  It took about a year for the black nail to work its way up and eventually be removed.  In the meantime, I went back to work in May of 2012 and looked around for a newer pair of shoes that was like my old ones from the year before (wide across the toes).  I bought a couple of pairs and one worked fairly well.  But something funny is now happening to my nails ... three of them!  Both big toes and the right "index" toe (next to the big toe) have gotten really thick -- too thick to cut through with scissors or nail clippers (both of which disappear from my bathroom on a regular basis).

As well, I had to get orthotics for my shoes in the summer of 2012 because a variety of issues were making walking very painful.  I discovered I had flat feet, even though at rest it looks like I have high arches.  The fellow who assessed me said that I had "small foot syndrome" and described it as similar to putting tires for a compact car on a big dump truck.  (This is not really good for the self-image:  although I have gained weight in the last 3 decades, I am not dump truck sized.  However, forgetting the self-image, the image did make sense).

I couldn't remember the other comparisons, so I had to look up what I had posted on Facebook in August:

 So apparently I have small feet syndrome, which is like having 14 inch tires on a dump truck. The balance on each foot is like a 3-legged milk stool where all the legs are different lengths. And the diagnosis of my foot problem is equine something or other. All these analogies mean that I have flat feet when walking ... also the only place I don't have enough fat is on the soles of my feet, so they are callousing to try and protect the bones. Very entertaining appointment this morning, especially watching the video of what my feet look like when I walk. (I am pleased to note that my ankles and calves look quite slim though). Orthotics, here I come!

I found out from my other blogging friends a wealth of information about myositis and other auto-immune diseases.  So I am not alone in not having enough fat on the soles of my feet (not sure what kind of club that would be if one was "joining the club"!)

Today, I had an appointment for a pedicure and manicure.  I had bought a gift certificate at the fundraising Silent Auction for New Hope for Widow/ers (and their families) in November and finally got around to making the appointment.  How relaxing and totally decadent it is, to have one's feet soaked in warm water, nails trimmed, feet and calves massaged, and nails "prettied up" with colourful polish. Admittedly, the polish was probably not necessary, but the rest of it was long overdue.  Oh, and the callouses on the soles of my feet were sanded down.

My small feet were joyous as they left the salon. They have not been as painful walking sock-footed around the house either. Thus, I have happy, happy feet, which also makes for a happy me.

In case anyone wonders why I can't deal with these nasty nail and foot problems alone, we have to go back to the whole weight gain and polymyositis issue.  While my muscle inflammation (which I have now had for more than half my life) is relatively under control with various medications, my muscles are weak. thus making almost impossible lifting the foot up to where I can clip nails or sand down callouses.  When I do lift up one foot to put lotion on it, it is turned to the side.  If I was trying to clip nails, this would only work for one foot, as I am right-handed and  cannot seem to contort myself into the gymnastic pose that would be required.  The weight issue comes into play if I put my foot flat in front of my thigh (this sounds awkward, but it works sometimes).  My stomach gets in the way of the thigh, which then obstructs the foot and any visual display of the toes.  I don't think any sharp things should be used by me when I can't see what I am doing.  I wonder how blind people manage to do their nails.  Perhaps they don't have weight gain sneak up on them.

Anyway, happy happy feet.  I'm walking on sunshine.

A month of riding the roller coaster

What does riding a roller coaster make you think about? Highs and lows? Screaming your lungs out? Nausea and vomiting? Well, that's what my month has looked like since I posted my Christmas letter.

The weekend before Christmas started my descent into the pits of nausea ... always overnight, so as to create maximum disturbance for my trying-to-get-some-sleep-for-work husband, of course. I emerged from the clouds of not-being-able-to-keep-food-down on Christmas Day, when lo and behold, I was hungry for Christmas dinner (prepared by my dear mom!). Unfortunately, my very growling and empty stomach was not ready for turkey dinner, and proceeded to return it all after I went to bed. (Sigh ... what a waste)

December 26 Facebook post: I have been too sick for too long this season. And now I am awake when I should be asleep.

Dec 28: I think the final indignity of being sick is that I can't sleep. My feet are hot and stiff and I have leg cramps.

Of course, another indignity was going to the doctor's office, being put in the back room in case I was contagious, having the doctor confused about whether food was going in or out, and sending me to get the materials to take a stool sample or two. Now I ask you, if you have been throwing up forever and a day, what effect is scenting one's own stool going to have on the steadiness of that poor tummy? Bleah!

Dec 29: I am returning to life ... still pajama-bound and tired, but not drag-yourself-on-the-ground tired. If I had to answer the questions that the pulmonary hypertension specialist asked this week, I'm sure he'd have me hospitalized. "Can you walk a block before getting tired?" "How many stairs can you climb before you have to stop and rest?" I did have to laugh at the one about the stairs ... if I stopped and rested, I'd never get upstairs. Momentum, that's the key ... you can always breathe when you get there!! Maybe I'll go look for some excitement in the washing machine.

Dec 30: Today's update: every muscle hurts. How can lying on the couch and in bed cause everything to hurt? Shouldn't rest make a person feel better?

On the plus side (or plus size): my appetite is returning.

Dec 31 ... I apparently thought I was feeling better and drove my bride-to-be daughter,her bridesmaids, and her mother-in-law-to-be to Kelowna for an afternoon of trying on wedding dresses. Yes she found one that she loved. And she bought me a Starbucks drink (caramel frappucino). But I returned to the nausea and vomiting all night (Happy New Years anyone?) and was wiped out for the next week. Didn't go to work at New Hope on Jan 3rd ... no point in making my seniors sick too.

January 7: Managed to get a lot done without leaving the house today (too much snow plus still recovering from whatever this was). Submitted 4 reports for the church annual business meeting. Yes, four. Clerk's report, minutes of last meeting, membership list (3 pages) and librarian's report. I rock. Or so I've heard.

Turned down several days in a row of substitute teaching ... no way could I handle looking after a class of kids. And when it got back to being my turn to teach Sunday School last week, well, I got sick Friday night and was so wiped out Saturday that I had to phone and get someone else to take my turn.

This week ... I managed one morning of substitute teaching in the high school my sons attend ... first period I did photocopying during the teacher's prep period, and second block I "taught" a grade 8 computer class. I was quite amazed because they settled down immediately and did what they were supposed to be doing. That hardly ever happens. And I managed a morning last week at New Hope and a morning this week as well. But I still seem to require a lot of naps.

For example: Tuesday - taught in the morning, napped in the afternoon, didn't sleep well at night.
Wednesday - napped in the morning, saw the neurologist in Kelowna in the afternoon, napped when I got home, and of course, didn't sleep well at night. Thursday - New Hope in the morning, napped in the afternoon ... still awake at 12:25 am.

So I'll wrap this up. I'm feeling better ... but not necessarily feeling well. Better than I was, but not "all better". Perhaps I'll sleep tonight. In the jungle, the mighty jungle, the lion sleeps tonight.