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What do you hide from the world?

/ wantonwordflirt / 7 Comments

Greetings new followers, as well as the faithful readers who always patiently await my return! Like Spring, I do eventually show up, full of hope and the promise of renewal.

So what prompted me back here today?

Oddly enough, it is the intersection of a fiction book I am reading for the local library book club, an upcoming meet-up I will be having with a group of medical students, and a presentation by a physician who is an artist/creator.

The title of the book I am currently reading is “The Vanishing Half” by Brit Bennett. I’m only half finished the novel, but it is providing me pause for thought. Without giving too much away, the story is about twin black sisters who, though inseparable as children, decide to live in two different worlds, one black and one white.

Midway through the book a Trans character is introduced. At that point I became fascinated with the thought of how people, though not necessarily to the extent of assuming another race or transitioning gender, live in a world that does not accept who they really are.

While mulling it over all week, I also asked myself what parts of myself do I hide from others? My initial response was nothing. I consider myself to be an open and authentic person.

Then I got the meeting reminder. This week I would again be with a handful of medical students I am matched with to continue the exploration of what it is like for me to be a patient in the context of a chronic illness that affects me on a daily basis.

“Society and Illness” is the topic this session. Possible discussion topics we were provided with include: how illness affects patients in society; how/when patients choose to talk about their illness; physician’s assumptions and biases which may affect patient interactions; visible vs. invisible illness and stigma.

Boom! There was my answer. What I hide from others nearly every damn day is having chronic illness. Since I am revealing this fact on a blog site that thus far has been primarily about my illness, it seems rather contradictory and illogical. I won’t blame you if you do not believe me, but it is in fact true.

The world we live in, though admittedly changing, is still a white, cisgender world. It is also a world for the strong and healthy. There is no favour to be won in society by admitting to chronic illness or invisible disability. Revealing illness seems akin to admitting weakness and vulnerability. Alternatively, disclosing and discussing illness may be viewed as attention seeking behaviour.

So why did I start and continue this blog? That is a question I seem to cycle back to, time and time again.

Initially my motivation was to share my experiences of illness with others so they would feel less alone in their struggles. I find reading about the medical adventures of other patients informative, fascinating, and validating, so thought I could reciprocate with my own stories. I also hoped sharing creative expression as a method of “healing when cure is not to be found” might be helpful.

Last night, I attended a workshop by Dr. Kevin Dueck, an Ontario primary care physician who also works in emergency medicine and addictions. In his presentation “Staying Human in Medicine”, he talked about art, story and creation being an outlet and means to process events, explore feelings, and personal expression. He shared some of his own creative work.

(Dr. Dueck’s writing can be found at http://www.Abootmedicine.wordpress.com)

Dr. Dueck was, of course, speaking from the physician perspective. He talked about the secondary trauma ER docs experience, the patient suffering they witness, the issues surrounding medical hierarchy, moral distress and the barriers to executing the care they wish to provide individuals, and of course the culture of toughness within the medical profession. He talked about sublimation as transformation rather than repression.

And that is when I realized why I continue to come back to my blog even after long absences. It is also why I return to themes of living with chronic illness, even though that was not my first intent. Here, I do not have to repress, censor, ignore, or pretend. I can transform, rather than repress. This is a place for me to create and connect with those who are willing to accept.

Hey, don’t judge me based on my past! Guess whose music I love now?

/ wantonwordflirt / 4 Comments

I remember having music in my life as far back as I can remember. My Papa had records like “Sing-a-long with Mitch Miller” which were really corny “pop” songs from the 1950s-60s….that had lyrics like “mares eat oats, and does eat oats, and little lambs eat ivy”.

And Grandma and Grandpa had CFCW country radio on all day long in their upholstery shop as they worked, so I heard lots of Tammy Wynette, Johnny Cash, Glen Campbell, Patsy Cline, and George Jones. I do not recall liking it or not liking it, it was just part of the work environment, always on, every moment my grandparents were in the shop.

So that was my first exposure to music, along with listening to “pop” music of the 1960s on my Dad’s  car radio when we travelled or to albums we had at home such as “Herb Alpert and the Tijuana Brass” played on the big console stereo in our living room.

My other early exposure to music was via my Uncle Ron. When I was little he was still a teenager. He had an electric guitar he could not really play, but he had record albums of Steppenwolf, Jimi Hendrix and Janis Joplin he would listen to up in his room. Quite a contrast from what was on the radio out in the shop. And Aunt Louise was a huge Elvis Presley fan, so I heard lots of his music too. I had a very eclectic start to music exposure!

When I was around 10 or 11, Auntie Sis (Velma) gave me a hand me down stereo. It was a “portable” stereo that kind of looked like a blue suitcase on its side. A door opened and pulled down which was the turntable, and the two speakers were on each side. Having my own record player I now began to get my own records, the first two were “The Archies” (a “fictional” band) and “The Donny Osmond Album”. My two favourite songs were “Puppy Love” by Donny Osmond and “Everything’s Archie” by the Archies. They were followed by The Partridge Family album because I was in love with David Cassidy, the oldest son in the fictional TV family The Partridge Family. My favourite song by was “I Think I Love You”. Sonny & Cher also had a popular TV show at that time, so of course I liked them too, especially the two songs:  “Gypsies, Tramps, and Thieves” and “I Got You Babe”.

I was lucky enough to have “disposable income” from my allowance, or birthday gift money;  then later at age 12 I started to babysit, so I had money to buy “singles” or “45s” for $1.00 or albums for around $3.99. I recall it being exciting that mom and dad let me go into the chain record stores like “Sam the Record Man” and “A&A Records” in Londonderry Mall (the newest mall in Edmonton at the time) by myself to buy a new record or two. I loved record shopping!

Some of my money also went to buy magazines at the drug store such as “Tiger Beat” that were full of photos and stories about the teen music idols of the day – David Cassidy, the Jackson 5, the Osmonds, and Bobby Sherman. Of course I also liked the popular K-Tel records which featured all the “hottest” songs of the year.

I had lots of fun with friends and my record player + records downstairs in the basement, as we “lip-synced” along to the songs holding the microphones I made out of tin foil. I can only imagine how much fun we would have had if Karaoke would have been available!

(*This post was the introduction to a narrative I was asked to write for “Story Worth” in response to my son’s question: “What is your favourite song/band/album?” If you have not heard of www.storyworth.com I recommend you check it out. We will not see the finished product – the printed book – until the end of 2021, but I love the idea of a question a week to prompt  memoir writing so families get to know more about their loved ones, and have it compiled in a keepsake book. Note: I have no financial interest in the company.)

I’m back. Hope the magic will follow.

/ wantonwordflirt / 10 Comments

In the last eight months not one person has asked me why I have not written a blog post. I could be devastated, crushed, demoralized. I could decide to scrap the whole thing.

Maybe I should quit.

But I am not going to. Not yet.

Why bother, you may ask, if no one even notices when you are missing?

Because even though no one wondered enough to ask me why I was no longer posting new content, when I looked at the analytics of my blog I discovered that even in my absence, new readers continued to discover the old posts. I have always said if my writing helps even one person, then it is worth my time.

I began my blog after reading “Let’s Pretend This Never Happened” by Jenny Lawson. I discovered beside writing memoir, she also had a blog: www.thebloggess.com   

Her writing focuses on her day to day struggle with anxiety and depression. She writes authentically, with sarcastic humor. She is an inspiration to me, as is every person trying to live their best life with health difficulties, either mental or physical. I would say that is damn near all of us this past year or so. And if it isn’t “us”, then it is someone near to our hearts.

Jenny now has two follow-up books to her debut memoir. Her struggles continue; her writing does too. Maybe Jenny Lawson doesn’t just write for an audience. Maybe she writes to save her life.

Maybe I don’t just write my blog posts for you. Maybe they are for me too.

If this post seems incoherent and scattered, you are not wrong. You would also be right if you guessed that is a reflection of my state of mind over the last eight months since my last post.

I did not write new blog posts because I typically wish to add a dose a humor to my stories. I’ve always been able to find humor in any situation, but over the course of the past months, even my dark medical humor was missing. And that folks is how I know I have not been myself.

I know I am not alone. Though I have not been present here, I have not been in seclusion. I have been off cavorting with words in other places. I’ve been in online courses and writing groups with other “creatives”. I’ve felt the weight of the longing for normalcy in our days, human connection, and the yearning for creativity to spark once again, in myself and others.

I’ve decided to stop waiting for creativity to strike like lightning, for the light bulb to appear over my head, and instead just get butt in chair, pen to the page, fingers to the keyboard, and let the magic return one word at a time.

And isn’t that how magic happens? Take a leap and believe.

Mr. Wanton’s new nickname for me!

/ wantonwordflirt / 6 Comments

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!

/ wantonwordflirt / 3 Comments

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….

/ wantonwordflirt / 9 Comments

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

/ wantonwordflirt / 5 Comments

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.

/ wantonwordflirt / 20 Comments

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

/ wantonwordflirt / 7 Comments

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!

/ wantonwordflirt / 4 Comments

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.