Mr. Wanton’s new nickname for me!

Having ordered my groceries on-line, I was waiting for the call to go pick them up curbside. No pre-set pick up times out here in the boonies; you go get the groceries immediately when they call.

While I was waiting at home for Sobey’s to call, my three year old grandson called to FaceTime with me. Sometimes he calls, talks for 30 seconds and is done, but this time he was chatty. After a couple of minutes, the landline phone starting ringing. Call display was showing it was the grocery store, so I picked up while still on FaceTime on my cell phone with Charles.

As I was confirming my credit card number with the Sobey’s clerk, I had a sudden urge to use the washroom. ARGH! Why does everything happen at once? Quickly, I finished my Sobey’s business, then told Charles I must end my FaceTime call, so I could go to the bathroom. Charles protested,”No, Baba I want to talk to you.”

“Talk to you later! Love you!” I hung up, feeling like the worst grandma ever!

I had on my “dog pants”; the pants I usually wear at home so when our Labrador Retriever slobbers on me it won’t matter. I grabbed clean yoga capris, pulling them on quickly, as I dashed out to my vehicle.

Mission accomplished, I returned home to spend the next four hours washing everything from the store, putting it away, then making our supper, and finally doing dishes. After supper, Mr. Wanton and I were relaxing, watching TV. I looked down at my legs elevated in the recliner.

“OH MY GOD, my pants are inside-out!”

With no emotion, Mr, Wanton replied, “So? It’s just us here in the house, who cares? It doesn’t matter.”

I jumped out of the recliner like it was an ejection seat.

“I wore these pants uptown!” I shouted.

I spun my body around so my backside was towards Mr. Wanton.

“Can you see the tag? Is there a tag hanging on my butt crack?”

“I can’t see your butt at all; your shirt is so long.”

I tugged my shirt up.

“What about now?”

“Oh yah, I can see the imprint of the brand and size, but the pants have no tag.”

Now, I was laughing, realizing unless someone was close to me they would not see the seams of my pants on the side of my legs. Whew.

I actually had inside-out pants on for the last six hours and didn’t even notice. I asked Mr. Wanton if he thought me going to town in inside-out pants was a sign of being too relaxed, or too stressed? He diplomatically “pleaded the fifth”.

A few days later, it was my birthday. For the first time ever in his life, Mr. Wanton baked a cake.

My parents, my son, and his girlfriend came for an outdoor visit. Mr. Wanton was in and out of the house as he checked on his cake project. My Mom asked him what kind of cake he was making.

“Square“, he said with a smart-ass grin.

“No, it isn’t, it’s a rectangle. Two sides are long. ” I laughed.

“Square, rectangle, same thing.”

I said, “If that cake is a square, then I am hourglass shape!”

“What shape do you think you are?” he asked.

“Rectangle! Just like the cake! A vertical rectangle, with arms and legs, and a head sticking out.”

“Like SpongeBob SquarePants?” he asked.

“Exactly! Except I have a head on top!”

The cake and the birthday visit were both a success.

That night as I collapsed into bed, a voice came out of the dark.

“Goodnight Sponge Baba Inside-out Pants!”

Mr. Wanton had a change of heart!

Nearly nine months ago Mr. Wanton, my husband, had a heart transplant. Because of his blood type (A+), he was fortunate to have a relatively short wait on the transplant list. A new heart became available to him less than six months after being placed on the list. Some wait years. Some run out of time.

Of course a heart comes from a deceased donor, unlike some instances when a kidney or a partial liver comes from a living donor. We all have only one heart, no spare parts to share. His heart came from someone who was clinically brain-dead but still had healthy organs. The person’s brain was functionally deceased, which is most often due to some sort of accident such as motor-vehicle incident, or perhaps a drug overdose. The donor organ often comes from a young, otherwise healthy person. We do not know anything about his donor. We may never receive any information about them.

There are no words to describe the depth of gratitude we have for the person who gave my husband the gift of their heart, or their grieving family who ultimately made the final decision for their loved one’s organs to be donated. “Thank you” is just so small.

Though Mr. Wanton was not on the list long, his journey to get there was not an expedient one. He was first diagnosed with heart failure due to a suspected viral cardiomyopathy as a result of a typical seasonal flu virus seven years prior. Then for two years before his transplant he was being kept alive by a mechanical heart pump – an LVAD, which is portable life support often referred to as a “bridge to transplant”. Mr. Wanton was plugged into the wall at night by an electrical cord I called “his leash”. He carried rechargeable batteries the size of VHS tapes on his body during the day to keep the pump flowing, his heart going.

Understandably my focus was on Mr. Wanton for the last few years. He has recovered well. It is now time for us to return to regularly scheduled life. It is time for me, to return to me.

Seems I am the Sjogren’s groundhog, appearing once a year….

July 23rd is World Sjogren’s Day, a day set aside to honor Dr. Sjogren who identified the illness. The syndrome was officially recognized in 1933,
yet it remains an often undiagnosed/misdiagnosed illness. There is still no specific treatment for Sjogren’s. Because researchers still do not know with absolutely certainty what causes Sjogren’s it remains without a cure. Before you can truly fix something, you need to know how and why it is broken.

So though I have only posted on my blog once since this day last year, World Sjogren’s Day has me poking out of my hole to remind those “in my world” awareness needs to continue so that some day there may be, if not a cure, at least targeted effective treatment.

It is amazing what one can get used to when you experience it daily for years – in my case the chronic exhaustion, muscle and joint pain, the dry sore corneas and mouth, the side effects of chemo meds for Sjogren’s related autoimmune hepatitis. In spite of it all, I am doing quite “okay”.

On this day, my heart goes out to the newly diagnosed who are just learning to accept and navigate the myriad of symptoms and illnesses associated with Sjogren’s Syndrome. And to those who are yet to be diagnosed but searching for answers as they go “shopping” from doctor to doctor looking for one who has knowledge of this still seldom known illness with its diverse constellation of symptoms – do not give up!

For more information read my archived blog posts and/ or contact the Sjogren’s Syndrome Foundation.

Click on chart to enlarge:

P.S. Stay tuned; I plan to be here more often thanks to some inspiration from a writing friend mentor. Reading her recent work has reminded me that writing is indeed “good medicine”. 🙂

sometimes all you can do is walk, read a poem

For several years I have been submitting a poem, or two, to the annual Friends of the
University of Alberta Hospital poetry contest. The poems are to focus on “hope,
healing, and the hospital experience”. Medical staff, patients, and visitors are
all invited to submit. The selected poems are on display for one year on the
“Poetry Walk” wall on the second floor. The “Poetry Walk” is across from the pedway
to the Kidney Clinic, or straight down the long hall from Diagnostic Imaging or
Dentistry, should you be local to Edmonton, Alberta and some day wish to read the
chosen poems. Though to be honest, I hope you never have occasion to be at the
hospital.

CLICK on photos to enlarge / read.

This year, for the second time, I have one of my poems chosen to be displayed on
the “Poetry Walk” wall. The poems are selected by a panel including hospital staff
and the head of the “Artists on the Ward” program”. The “Artists on the Ward”
program” is dear to my heart. I believe the program staff and volunteers do work
that may be more healing to many patients than any prescription medication or
procedure. A patient may request a visit from an artist to write poetry or stories
together, paint and sketch, or perhaps create or listen to live music.

I discovered the “Poetry Walk” by chance in 2012, when my husband was first a heart
failure inpatient at the Mazankowski Alberta Heart Institute, attached to the U of A
hospital. I needed time away from him to collect my thoughts, so I set off on a
walking meditation. As I wandered throughout the hospital, I happened upon the
poetry. I recall reading a poem about a woman who sat vigil by her spouse’s bedside,
knitting. I continued reading the poems. I felt my breath deepening, shoulders and
neck relaxing, mind clearing, as I continued down the row of frames.

In January 2018, my husband returned to the hospital via ambulance, becoming an
inpatient once again. The dilated cardiomyopathy (believed to be viral in cause) now
had him in end-stage heart failure, too ill to wait for transplant. Mechanical
circulatory support via an LVAD to pump for his damaged left ventricle became the
only option to prolong and improve his life. It is not a cure. It is 24 hour, 7 day a
week portable life support; but it is life. He was an inpatient for five weeks.
Again, at times I needed to wander the lengthy halls alone, to find comfort in reading
words on the wall when I could not write my own.

On February 14th, 2018 my husband was to be sent for an echocardiogram. The unit
staff was busy, so I asked to take him in the wheelchair for his echo by myself.
Allowed to remain with him during the ultrasound of his heart, I watched the screen.
I was struck by the realization of what day it was on the calendar, as well as what
I was observing.

Almost one year later on January 31, 2019 I wrote “On Valentine’s Day” which will
be on the “Poetry Wall” until 2020. It was my Valentine to Mr. Wanton this year:

Is it the best poem I’ve ever written? It is not. I don’t like that the poem is
“telling”; I should be “showing” (my writer friends know exactly what I mean).
But poetry is subjective – people like what they like – and for whatever reason, this
year the jury selected it. Though the poem is far from my “best”, I hope it might
bring comfort some day, in some way, to some other wanderer.

Bad news: we are all dying. Good news: we can still laugh.

We are all going to die. Some of us know when it will happen and some of us do not.

The doctor called with bad news today. The first thing I thought after gently setting the phone down on my desk was should I still order those new sandals on-line?

Summer weather is almost over where I live. I won’t have much time to wear them before the snowflakes fall. My husband is always astonished at how far I push the flip-flop season. As long as there has been no snowfall sticking to the sidewalks and grass I am likely to still slip on my flippies to at least go out in the yard, if not to town.

I wonder if it is worth spending money on something that I might not be around to wear next summer. I suspect this is a weird worry to have; maybe not, who knows? But the sandal concern reminds me of the other day in the car on the way to my doctor’s appointment the underwire in my most loved silver grey bra poked through. Oddly both sides simultaneously peeking up and out of the top of my tank top like two white antennae of some creature living nestled down between my boobs.

bra betrayal

As Mr. Wanton drove down the highway attentively I kept poking the wires back into place, but with the slightest movement of my body, out they would inch again.
“Screw it!” I said, and yanked them out completely.

Mr. Wanton, concentrating on driving as we entered the town limits, was unaware of my struggle until then. He glanced over at me but said nothing.

I held the two large “U” shaped white plastic coated wires up near the rear view mirror so Mr. Wanton could see them. Holding them in one hand, I twirled them around between my pointer finger and thumb.

“I think I could make something out of these. Like, maybe a mobile; see how easily they twirl. Wow, I sound like my Dad.”

I laughed.

Mr. Wanton said, “Yah, you do sound just like your Dad. Maybe give them to him to put in his garage.”

Now we both laughed.

I agreed. “Yah, Dad could add them to his collection of stuff he might need some day.” I took a long deep breath and sighed. “I guess I am going to the clinic floppy today.” I was somewhat confident the doctor might see worse things during his day than me hanging low.

Mr. Wanton, eyes on the road, was oblivious to my level of distress.

I’m sure no one will notice.” he said.

As we continued down the road I remember saying: “I guess I will need a new bra”.

And now I wonder, will I?

And that’s the thing when you get seriously bad medical news with no specific deadline, just vague inclination of impending doom…do you buy the one season shoes?

I didn’t buy the sandals, but I have splurged on a fabulous, lacy, deep raspberry fuchsia pink underwire bra made in France. I hope I get to wear it until the fabric is worn thin and the wire antennae poke up from my cleavage once again.

P.S. Since I posted this, people I love (and who obviously love me) have been sending me messages of concern. No need. I have no idea what is going on medically really, no specifics yet, other than the docs are concerned because I have connective tissue diseases and some preliminary testing points to those illnesses now affecting my heart and lungs. With miracles of modern medicine I hope to be out in the grass in my barefeet and flippies next season, and several to come! 

But seriously folks, no guarantees in life except it will end. What sparked this post is that I was thinking how I much rather it would be later, than sooner.

My Mom’s Surprising Diagnosis

Today is the last day of Celiac Disease awareness month. Though I have known of celiac disease for most of my life, it was only recently and unexpectedly a family member was diagnosed. Celiac Disease is yet another condition in the huge family of autoimmune diseases, one that many people consider rare though it is more common than people suspect. Like a host of other autoimmune disorders it is not always diagnosed expediently.

Celiac disease is not to be confused with gluten-sensitivity, or choosing to eat gluten-free as a lifestyle choice. Not adhering to a strict Celiac diet can result in life-threatening consequences for an individual diagnosed. Even a few molecules of gluten can cause harm to a person with Celiac Disease. Yes, I do mean a few molecules!

My Mom was recently diagnosed with Celiac Disease at the age of 75! Yes, 75. In hindsight she probably had it for years, possibly decades yet neither she nor any of her doctors suspected she might have it. Her diagnosis came somewhat by chance, through a series of circumstances that thankfully provided her with the opportunity for testing.

IMG_1157
(Mom and I – Christmas 2015)

Almost two years ago Mom had a FIT screening (a test which looks for fecal blood) which came back positive. Though she did not verbalize it, I am sure like everyone else who receives such a result she thought “oh no, colon cancer”. The fact she comes from as she calls it “a cancer family” did nothing to alleviate her fears. Once she told me about it, I reassured her it was possibly a false positive result. I also reminded her the test was a screening tool, and not necessarily an indicator of a serious issue. She was aware she would need a colonoscopy to follow-up on the test. Something she absolutely was not enchanted with.

I had recently had a colonoscopy done myself, by a local doctor who now only does gastroenterology scopes. Other than the prep which involves doing the Mexican two-step back and forth to the toilet all evening and night before the procedure, I assured her the procedure itself was a breeze. I remember her sarcastic reply of “Yah, sure.” I insisted I was not lying and explained she would not require general anesthetic rather she would receive efficient new sedation drugs that would have her feeling like she went out and back awake in seconds, with no nausea of the type she was prone to from anesthetic in the past. I told her to request the same doctor as I had since I had such a good experience, so she did.

Besides the FIT screening, the other reason for Mom’s concern was that she had begun to have more and more frequent bowel troubles. Often waking very early in the morning to have to have what she refers to as an “evacuation”. Sometimes this would occur days in a row with no seeming cause such as a flu virus, food borne illness or food poisoning. Naturally she became more and more vigilant about what she was eating. She started to have an aversion to travelling very far or in early mornings if no comfortable washroom available on route.

I had discussed my Mom’s on-going issues with a friend at yoga who eats gluten and dairy-free. She told me that I must tell my Mom to have her doctor check her for celiac disease. I assured her I would. Mom did ask her doctor about it and he said “No, you do NOT have Celiac Disease”. And if I recall correctly he also said he didn’t think she had it because she was not “malnourished”. My Mom has never been overweight, or underweight, always a normal healthy weight. Her diet also exemplary.

So Mom did have her colonoscopy. Immediately afterwards the gastro doc came to speak to us and he told her the bowel looked fine, no appearance of cancer. There was no visible reason in her bowel for her frequent trips to the bathroom. He then told her that she should be checked for Celiac Disease with the screening blood test called tTG-IgA. He explained that if that test came back positive, she would require an upper scope at which time small biopsies would be taken to determine a definitive diagnosis. He emphasized she must continue to eat gluten until both the blood test and scope / biopsies were done.

Imagine my Mom’s surprise when the blood test didn’t just come back positive, but extremely high positive. It was multiples and multiples beyond a normal result,approximately 100x greater than a negative value.There was little question that Celiac Disease was the reason for my Mom’s increasing digestive distress. Negative is less than 4, 4-10 is a weak positive, and greater than 10 is positive.

So, Mom returned to the hospital where I live to see the same Gastro doc again for an upper scope and the biopsy of small intestine. When she woke up, the doc came to her bedside with photos showing the damage to the villi in her small intestine. Celiac disease damage was evident in her small intestine, biopsy results later confirmed it for certain.

On the way back to my house we stopped at the store to buy some gluten-free items and Mom began eating gluten-free that very day. Within mere days she noticed a difference in how she felt and the frequency of her pre-dawn bathroom trips diminished. There is no cure for Celiac Disease but with vigilance to a gluten-free diet it can be controlled. There have been times when she has had recurrences of her intestinal distress, which she chalks up to eating something possibly contaminated with or unknowingly containing gluten, but overall she is vastly improved.

Ironically over the years my parents traveled to many countries overseas, with my Mom vigilant about what she ate. She would be frustrated as she was always the one who was careful not to eat fruits, vegetables, and especially anything uncooked such as salads that could be contaminated. She watched others eat everything in sight, while she ate her “safe” foods – breads and pastas – hoping to avoid emergency bathroom trips while on bus, car, or river cruise excursions. How ironic she said she was actually against her knowledge eating the absolutely worst foods for her body.

Mom is also a phenomenal bread maker and once she retired she made all her bread homemade, rich in whole grains thinking she had improved her diet even more.

They say when you know better, you do better. My Mom sure has. I’d be lying if I said that she doesn’t miss some foods she used to love, but can no longer eat nor find comparable substitutes – such as her own whole-wheat flax bread or festive fruit bread. She has educated herself well from various sources, including becoming a member of the Canadian Celiac Association, and joining an on-line forum for individuals with Celiac Disease to share resources, information and support.

I certainly hope now that Mom’s doctor knows better he will do better too. He was taken aback by her diagnosis. Instead of Mom just being upset by his pronouncement that she absolutely did not have Celiac Disease, she took the opportunity to educate him bringing in a list of symptoms often experienced by those with Celiac Disease, with all the ones she experienced highlighted. Mom was diagnosed with osteoporosis years ago, which I had always found odd since she had always been active doing weight-bearing activities, and a consumer of dairy all her life. We will never know for sure but it could be a result of her being an undiagnosed Celiac, osteoporosis is but one symptom.

For more information on diagnosis, symptoms, and living with Celiac Disease seek out your local Celiac Associations or visit these links as a starting point:

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/82587

http://www.celiac.ca

http://www.hopkinsmedicine.org/healthlibrary/conditions/digestive_disorders/celiac_disease_85,P00361/

Remember if you believe you have Celiac Disease and your doctor does not believe it is possible, do not be afraid to educate yourself so you may have a more informed discussion, as well as the ability to advocate for yourself if need be. I wish you well.

Bite-size Memoir Yum, yum!

A fellow blogger, Lisa Reiter, started a project called “Bite-sized Memoir”. The challenge is to write a 150 word piece of memoir on the topic she provides each week. Thought I’d give it a go. If you’d like to learn more, or participate (even if you are not a blogger you may do the challenge and post in the comments section of her blog on the page for each week’s particular topic). Here is the link for more information / guidelines:

http://sharingthestoryblog.wordpress.com/2014/05/02/bite-size-memoir-no-1-school-at-seven/comment-page-2/#comment-239

This week’s topic was “School at Seven”. I missed her deadline for compilation but decided to do it anyway to warm-up for next week’s topic which she will publish tomorrow.

I am curious to see if I will find this writing just as delicious as those bite-size muffins I was woofing down from the market all summer!

 

School at Seven

I entered the grade two class of Miss Dari at St. Paul Elementary School in 1968. Her classroom was on the east side of the “old grey school”, the single story wing attached to a brand new two story wing for the older kids. The “older kids” were grade four and five. My Mom was up there too, teaching grade five.
I have few memories of particular activities and lessons in the classroom. However, strangely enough, I have a very vivid recollection of the very first word list lesson in the little hardcover Macmillan spelling text book. The first words we had to know how to spell that year were: the, is, not, cat, cow, car. And they were in that exact order. I would challenge any psychotherapist or neuro-psychologist to explain to me why that spelling list remains embedded in my memory to this very day.

“Sisterhood of the World Bloggers Award”

sister-hood-award

I would like to thank ITTYMAC  for nominating me for the “Sisterhood of the World Bloggers Award”. As a novice blogger I truly appreciate that someone reads my blog, let alone finds it among their favourites. I thoroughly enjoy reading “ITTYMAC – One seed can split a boulder into a handful of stones – A philosophical view of everyday life.”  The insights she offers about life’s journey, especially in later life, are enlightening, inspiring, humorous, and authentic. I encourage you to check her out:

http://ittymac.wordpress.com

~ ~The Rules ~ ~

  1. Provide a link to and thank the blogger who nominated you for this award.
  2. Answer ten questions.
  3. Nominate 10-12 blogs that you find a joy to read. Provide links to these nominated blogs and kindly let the recipients know they have been nominated.
  4. Include the award logo within your blog post.

~~Questions~~

1.  Your favorite color….blue – greens

2.  Your favorite animal … Yellow Labrador Retrievers, cats, donkeys + jack-rabbits

3.  Your favorite non-alcoholic drink ….tea

4.    Facebook or Twitter….. Facebook, seldom Tweet

5.    Your favorite pattern …..waves

6.    Do you prefer getting or giving presents…. giving

7.    Your favorite number …2, 7, 13

8.    Your favorite day of the week ….Wednesday

9.    Your favorite flower ….lilacs

10.  What is your passion? ….. reading, writing, being curious / learning

There are so many deserving blog sites and so little time.  Here’s a list of a few of my favourites, in random order. Do not worry if I nominated you and you are unable to / do not wish to participate. Readers, hope you will take the time to visit a few of these blogs. Enjoy!

http://humoringthegoddess.com

http://theempathyqueen.wordpress.com

http://whatdoyareckon.wordpress.com

http://wordbitches.com

http://booksonthetable.com

http://www.shannonraelynn.com

http://morningcoffeebliss.wordpress.com

http://yogasoulblog.com

http://honeydidyouseethat.wordpress.com

http://raisingthebarrblog.wordpress.com

“Home”

I have the urge to collect the sparkling crystals in a clear container. However, I know from having collected butterflies, bees, frogs, and dandelions in jars as a child, I cannot capture nature for a later time, it has to be revered in the moment. A moment like now; a morning when diamond crystals hang from every branch, every stem. Every individual needle and twig sparkling in the late morning sun against the perfect winter sky painted solid blue.

Ice formed on the lake overnight for the first time this season. Not all across but for several hundred feet out from shore, white solid stillness, with ripples of dark water beyond. The last of the geese float by silently.  All the birds and animals are silent. No chickadee calls, no blue jay squawks, even the squirrel is without chatter. All that can be heard from them is the cracking of the sunflower seeds that have been left for them to enjoy, followed by the sound of the shell dropping softly onto the glistening frosty snow below.

A trail of tracks goes across the snow covered grass to the bird feeder. Deer tracks. The same tracks go to beneath the Mountain Ash tree. Yesterday a flock of over a hundred cedar waxwings descended in the afternoon, a flutter of activity enveloped the tree as they attempted but were unsuccessful in eating all of the berries. A bumper crop this year, allowed for some to remain for some other creature to feast upon. The lower limbs of the tree are naked now. All the bright scarlet ornaments are gone, devoured by the two deer that came before I woke.

I think of clichés. How lucky I am to live here, how blessed. I take a deep breath. Let the cold air fill me; let my body make it warm to flow back out. I am calm. I am quiet. I am home.002