Happy Grandparent’s Day!

My first three grandparents died when I was 11, 13, then 15 years old. All were “young”; my grandfathers under 70, my grandmother just 58 years old. The fourth I was fortunate to have in my life until my mid-30s.

Today is what many consider just another “Hallmark Holiday”, a day invented by the card companies to guilt people into buying overpriced pieces of cardstock filled with pre-printed sentiments they may or may not actually feel. Today is “Grandparent’s Day”.

When I was growing up this day did not exist, so I am inclined to be a bit cynical, believing it is a commercial invention. My family does not celebrate this particular occasion; rather we include the grandparents as part of Mother’s and Father’s Day. We are an efficient bunch.

Recently I noticed both of my parents somewhat melancholy when the subject of my grandparents comes up in conversation. A sense of loss no doubt resurfaces, along with awareness of being nearer end of life than beginning. Perhaps, like me, they are pondering how they will be remembered by their grandchildren.

I think it is disappointing for my mom to realize how few memories I have of my maternal grandparents – my Papa and Gram. She forgets how young I was when they lived in the same community, before they moved far away. Mostly they are known to me through what I have heard from my parents, and a few old photos.

What I do remember as personal memories are a handful of vivid vignettes, miniscule fragments of memory which at first seem irrelevant but are in hindsight moments of emotional connection for me. I remember watching Papa fishing; casting off a shore of a lake somewhere. A trip sitting in the backseat of their white station wagon going up the long mountainous hill between Beacon Corner and Bonnyville with Smarties for a treat. Eating delicious smelling homemade soup out of a bright turquoise plastic bowl in their kitchen. Looking inside the old pop cooler with glass bottles hanging in ice cold water when they lived and worked at the gas station. Petting their old black velvet-eared Labrador “Sparky” outside. Those are the only memories I know are authentically mine, not re-creations.

I have greater recollection of my paternal grandparents, as I spent a longer period of time with them. Going “to town” with Grandpa in his Volkswagen beetle to do the grocery shopping was an adventure. My earliest memory of Grandpa is him “taking off his legs”. How could that not have left an impression? He was a double amputee, who took his prosthetic legs, with socks and shoes attached, off at night. He would share the Rosebud chocolates in his bedroom cupboard, as I glanced at the images on the cover of his nightly reading – The National Enquirer – usually images of aliens and UFOs. Nights sleeping with Grandma in her bed, clinging to the edge so I would not roll into the middle, to possibly be squished (or so I thought). Grandma working alongside Grandpa “in the shop”, CFCW country radio blaring in the background. Her phone calls to ride my bike over to her house to “pick up perohy”. The all-encompassing hugs snug against her soft round body. Her genuine laughter, both in person and on the page. I always say Grandma was the originator of “LOL”; when I was at university she sent handwritten letters with “ha ha” scrawled after many sentences.

None of these memories are extraordinary on their own, but like the quilts my grandma made of fabric scraps, the bits and pieces come together to make something beautiful – something that feels a lot like love.

5, 4, 3, 2, 1, lift off…..I was too tired to start at 10.

The past week has been a struggle for me energy wise, even more so than most. It is never a surprise when I get a plummet. Like many who suffer with Sjogren’s or other connective tissue diseases, my energy can wax and wane somewhat from day to day. The fatigue overall is relentless.

Even within a day, I may start off strong only to wither away by lunch. Likewise, I could be in my housecoat until brunch barely moving; then pick up speed throughout the day, finishing strong at 10 p.m.

On the “good days” I tend to “over do”, resulting in subsequent days trying to restore and rejuvenate my aching body, my tired mind. Most of the time my life feels like the cliché: “one step forward, two steps backward”.

Learning where the fine line is between not enough and too much is a constant battle for me. I’m the Goldilocks of activity.

Today this quote came up on my Facebook page as a memory from nine years ago:

“You can’t get much done in life if you only work on the days you feel good.” ~ Jerry West.

Well, that explains a few things.

I never feel good, I just feel less bad. I cannot even remember the last time I woke up in the morning, and popped out of bed thinking I was James Brown.

In general, humans believe the people who are successful are so because they motivate themselves and give life their best regardless of how they feel. To be successful, people must persevere. I do not dispute that whatsoever.

It is also common belief if someone isn’t working hard, or “up to their potential”, they must certainly be “lazy”, or the more polite term “unmotivated”.

If there is one thing having the several autoimmune diseases I’ve been diagnosed with has taught me, it is not to judge other people. If someone isn’t able to take care of business, getting stuff done, I am more than willing to give them the benefit of the doubt. There must be a good reason for their ineffectiveness, or lower productivity. However, I have immense difficulty not judging myself.

Acceptance of my finite amount of energy is difficult for me. I’ve always been a planner, a dreamer, and a doer. When you have high expectations of yourself, it makes sense your lack of ability to follow through would leave you feeling less than adequate.

So, what does keep me slogging along, getting as much done as possible despite my exhaustion?

The answer came today. Not as a revelation, but a reminder.

I saw an email ad for a seminar with life coach Mary Morrissey, in it she said even for a fully fueled rocket to be launched into space, it requires a booster rocket. She believes people are like that too. Even though we may be ready to launch, we still require a booster rocket too.

Thank you to my booster rockets – the people who don’t blow sunshine up my butt saying I can do anything, but who encourage me to do the best I can with what I have on any given day. Who knows? Someday I might really take off.

#writeforyourlife

While presenting a workshop I attended this week via Pandemic University, Michael Lista suggested people know they want to write, or what they want to write, long before they know the why.
Being a naturally introspective sort, I have been contemplating my “why?” ever since.

Then today I came across a fellow Sjogren’s friend’s post online saying she is going to be returning to writing her blog this weekend. Her comment to friends and family was “It’s scary”. This was my response to her:

“Being scared means you are vulnerable, being vulnerable means you are authentic, being authentic means you got real with your words, and that is what people relate to the very most. It’s all good.”

Today as I thought about why I write, I drilled down to be more specific, thinking about why I write about personal health issues. The personal health topic brings me the most fear when writing, but probably not for the reasons you might guess. What scares me the most is that people might think I am doing it for attention or sympathy. I fear people thinking I am being dramatic regarding events that happened. Trust me, truth IS stranger than fiction; I do not need to embellish a word.

So what do I want?

Why write health stories to post publicly?

One is a selfish reason, the other altruistic.

First, the selfish reason. I have zero desire for sympathy. However, I do crave understanding for my particular situation. I want people to understand my strange constellation of autoimmune connective tissue illnesses, the myriad of symptoms that combine to make every day a new adventure.

The second reason is to educate others, in the hope of preventing them, or someone they love, from suffering needlessly as they wade through the murky bog that diagnosis, treatment, and living with a chronic health issue of any type can be. I want to spare people needless anxiety, especially if they are in the middle of a health misdiagnosis fiasco.

So that is the why of writing about my medical issues. But what about my other writing – the word balm poems, the “bite-size” childhood memoir, the Mr. Wanton stories, the fiction and other memoir not yet published on my blog or elsewhere, but still buried in notebooks between other journal writing?

When I was a young girl, I remember playing games like tag, or Blind Man’s Bluff, running to breathlessness, being chased, kids hollering “run for your life!” I ran to be “safe”.

Now, “I write for my life”.

That said, Michael Lista also told the class this week: “Never trust a writer who thinks they’ve figured it out.”

 

Links that may be of interest:

Friend, fellow Sjogren’s patient, writer Christine Molloy’s blog “Thoughts and Ramblings on Life, Love and Health”. http://www.christinemolloy.com

Writer Michael Lista’s webpage. http://www.michaellista.com

Pandemic University, a totally fake university with excellent 90 minute live and archived writing sessions presented by experts in the field. http://www.pandemicuniversity.com

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’s Wild Ride

Mr. Wanton’s transplant medications make him prone to skin cancer, so for Father’s Day I bought him a SPF 50+ hat. I ordered it from Coolibar.* The package from the USA took over a month to arrive. Yesterday, he wore his hat for the first time.

Headed out to mow the grass, Mr. Wanton had on long pants, a sun protective hoodie, and his new hat. He also had on his “PPE” – a facemask and goggles – not because of any danger but because he has seasonal allergies. He is allergic to every type of vegetation in our rural yard, except spruce. Finally geared up, off he went.

While he was mowing, I was inside vacuuming. I noticed the ride-on lawnmower parked in the shade outside the living room and he was kneeling down doing something beside it. I was unconcerned as he occasionally tunes up the mower mid-job.

About 20 minutes later, he stepped into the house holding up a long, dirty, ripped, and torn rag. I was confused. Why was he showing me the rag he was using while repairing the mower?

“I ran over my hat.”

“THAT’S your hat? Your brand new hat?” I knew the answer but asked anyway, not wanting to believe it.

I started to laugh uncontrollably. I could barely breathe. I managed to gasp, “How?”

“My goggles fogged up because of the heat (31C). I couldn’t see where I was going. I got too close to the edge of the yard. I thought I was going over the 150 foot bank, so I quickly put the mower in reverse. Then I backed into some branches, my hat came off, I ran over it, getting it tangled in the blade. Apparently you can be wearing too much PPE, and be unsafe.”

He smiled; sort of.

Then I remembered how much I paid for the hat. Seventy dollars $US. I picked out that hat specifically because it had the widest brim as well as a cord you could cinch up. If Mr. Wanton was in the boat zipping around the lake and his hat flew off, it would not get blown away. Even though I was still laughing, my eyes welled up with tears at the thought of how much I had spent.

“Don’t order me another hat.”

“Don’t worry, I definitely won’t. You will be getting a $5.00 sombrero from the bargain store instead!”

Mr. Wanton located his old hat in the closet; slapped it on his head. He went out to finish the yard. I finally got control of my convulsive laughter, but one glance at the de-constructed hat on the floor and I started all over again.

Coolibar has lifetime fabric warranty. It might be worth sending the hat back, just to imagine the face of the customer service representative pulling it out of the package…and to anticipate the reply we might receive in return.

*Note: I have no financial interest in the Coolibar sun protection clothing company. I have purchased numerous cotton/bamboo jackets from them over the last decade.  I love my Coolibar hoodies.

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.

In honor of World Sjogren’s Day, allow me to say: I’m really f***ing tired!

Today is World Sjogren’s Day. Set aside to honor the birthday of Dr. Henrik Sjogren, who discovered Sjogren’s Syndrome, it is also a day to recognize the millions of Sjogren’s patients worldwide and create awareness of the often misdiagnosed / under diagnosed autoimmune connective tissue disease.

The main triad of symptoms that plague those, including myself, with Sjogren’s are: dryness, joint / muscle pain, and fatigue. The fatigue of Sjogren’s has been studied and found to equal that of MS.

A few months ago I attended a session with a motivational speaker who is promoting a book she authored detailing her personal experiences with low self-esteem, self-shaming, body image insecurity, and infertility. If all that was not enough, she also has a rare autoimmune disease affecting her lungs which required hospitalization in the past. The young mother is a passionate, energetic firecracker devoted to spreading her message of self-love and acceptance to women everywhere. She wants women to “embrace their flaws, own their awesome, breathe fire, and be world changers”.

As I sat listening to her impassioned message I was in awe of her enthusiasm. She speaks her truth unapologetically. After we applauded her, she opened the floor to questions or comments. I told her I thought she was delivering a powerful, needed message but personally I was just “too tired to be a world-changer”.

Her response to me was surprising. “Are you are hiding behind the mask of fatigue?”

What I wanted to say in that moment was “No, I am just truly f***ing tired.”

I wanted to tell her that my fatigue was no more a mask than her infertility was. It is not a choice. It is not something I can turn on and off, I don’t use it as an excuse, rather it is a truth. I did not share those thoughts aloud. I was also having the overwhelming thought that perhaps expecting all women to be world-changers might leave some feeling yet again “not enough”.

I sat there as she continued answering audience questions, stewing over my own thoughts and insecurities. Why was I reacting so strongly to her question? Was it because I was hiding behind a mask of fatigue; did being exhausted gave me any sort of personal pay-off, gains of attention, anything positive in any way? I believe the answer was, and is, no.

(Well, okay, it does give me something to blog about, but that’s all.)

In April I had to have a “level one sleep study”, the kind you have as an inpatient spending the night in a sleep lab hooked up to wires, sensors, recorders, and so on. Literally the sleep technician covers you from head to foot with equipment monitoring your pulmonary, cardiac, and neurological functions as you sleep. Decked out in all the medical technology paraphernalia I wondered how I could possibly sleep.


(Partially rigged up for the sleep study, more stuff to to be added, including in nostrils!)

Adding to the ambience, the room was seemingly airless except for the fan whirring in the corner. The bed was a typical hospital bed complete with vinyl mattress cover and pancake flat plastic covered pillow. Adding to the whole experience is the reminder that upon entering your room you stripped all your clothes off, except your underwear, to be enclosed in Rubbermaid containers as there had been previous bedbug infestations in the lab. And, if all of the above was not enough reason to provoke sleeplessness, the ceiling mounted camera capturing your every moment throughout the night becomes activated, the red “on” light glowing intrusively. The technician shortly thereafter announcing over a speaker in your room: “the study has begun”.

I wondered how valid these sleep studies could be; was it possible people actual slept under these conditions? As always, I was tired. I closed my eyes and hoped for the best. I did not want to have to do this again, ever.

Last week, I finally had the appointment to review the sleep study results with the pulmonary specialist who ordered the test. Good news was I do not have sleep apnea, which had been his main concern, thinking perhaps it was provoking my random intermittent episodes of atrial fibrillation heart arrhythmia.

I asked if there were any other significant findings. He said it was all quite normal, or in medical terms “unremarkable” except for one thing -I had slept 94% of the time.
Highly unusual he explained, for anyone to sleep that percentage of the time during a sleep lab study.

“You must have been extremely sleep deprived before the study”, he pronounced. It was a statement, not a question.

I’ve been tired since 1990. I could sleep anywhere, anytime is what I always tell people. Now I have the study to prove it.

 

 

For those who would like to know more about Fatigue and Sjogren’s: http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-types-of-sjogren-s-fatigue

 

My 3 all-time favourite memes re: fatigue (one of my least fave things) and sleep (one of my all-time fave things):

A bite-size piece of memoir for Mother’s Day

Dad served on the town recreation board for years when I was a kid. I was thrilled. Was I already civic minded? Was I proud of him being involved in community volunteer service? No, these were not the reasons.

Once a month, the “rec board” gathered for a supper meeting in town hall. Lucky for me, the perks of being an only child kicked in.

Mom took me out for Chinese food at the “Golden Dragon” every time Dad was attending the meeting. The front of the restaurant was a regular small-town cafe, but passing through the beaded curtain at the back, you entered the enchanting dining room. Dim light, Chinese lanterns, white fabric table cloths, stemmed water glasses, leather-bound menus, and wooden chopsticks waited. Mom and I regularly had arguments at home but once a month, over wonton soup, egg rolls, and Cantonese chow mein, we called a truce.

****************************************************************************************
P.S. Happy Mother’s Day Mom! This one’s for you:

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“Bite-size memoir” is a chunk of memoir just 150 words long, no more and no less.

It was first initiated several years ago by Lisa Reiter on her blog: https://sharingthestoryblog.wordpress.com/

If you enjoy writing but haven’t the time to get into a bigger project, or you are just starting to write, give it a whirl.

150 words may not seem like much, but have another read of the memoir above. Think about how much you learned about me, and my family,
in one little “bite”.