I love pizza, yoga and my Mom.

You cannot be on social media today without being reminded tomorrow is Mother’s Day in Canada. Like Christmas, Mother’s Day is not a day of celebration for everyone. For many it is a day of remembrance due to the loss of a mother, if not through death perhaps through estrangement. Sadly the reality of life is that days of celebration are not all-inclusive. Even those who are a mother themselves, or those who have a mother, may have reasons not to celebrate.

I do not take the fact I still have a mother for granted (she is nearing eighty, though without a doubt I know she’d rather I say she is just over seventy-five), but as I am reflecting upon Mother’s Day I realize I don’t think I’ve really ever told my Mom what it is I admire the most about her. Today is that day.

My Mom always told me when she finished high school she had only three choices of career: secretary, nurse, or teacher. She was not good at typing and did not want to work around blood, so her choice was obvious. Because there was a serious shortage of teachers when she graduated high school, she became as they were called back then – a “six week wonder”, attending summer school in preparation to teach a class right away in September. My Mom began teaching school in a small rural community in the late 1950s when she was just seventeen years old. She graduated high school at a young age because she had skipped a grade in school.

The fact that she took on the responsibility of teaching, and did the job well is amazing enough, but the fact she continued to do so for decades until her retirement in her mid-fifties makes it even more so. While teaching full-time she also completed her Bachelor of Education degree doing evening and summer school classes. Later in life when I discovered Mom was a life-long insomniac it boggled my mind to realize it had not been easy for her to get up early every school day, teach all day, make supper at home, then continue her own studies in the evening. She had, and continues to have incredible willpower. To me, that strength and perseverance is her most admirable characteristic.

Though some might say it was not so difficult (after all she only had one child of her own) Mom had her share of other worries during the span of her career. By the time I became a teenager, Mom had lost both her parents within a span of two years. Her Dad’s death was a long suffering one due to pancreatic cancer, and her Mom’s a sudden, unexpected one due to a smouldering house fire. Mom’s only sister (separated and with no children of her own) was diagnosed with metastasized breast cancer, surviving for years but often requiring emotional support especially during prolonged hospital stays. Mom never took a leave of absence during these difficult times but continued with her teaching responsibilities, filling familial ones in between.

Another example of Mom’s willpower was when she decided to quit smoking. She had started as a teenager. Remember, back then doctors didn’t even advise pregnant women to stop the habit, and they even smoked inside the medical clinics and hospitals. However, when it was discovered that smoking increased cancer risk, Mom signed up for a seven day smoking cessation workshop for seven consecutive nights. I was around eleven years old then; I still remember she was grumpy and short-tempered for a few days. She was successful though, she never smoked again.

Likewise, when the news reported butter was not good for you and caused high cholesterol – BOOM – Mom stopped eating butter. Mom was diagnosed with osteoporosis at quite a young age, in hindsight probably due to having undiagnosed celiac disease for years. Learning it was important to build bone density via weight-bearing exercise, she began to walk regularly and joined a Curves gym when it opened in her community. During inclement weather she walks indoors on the treadmill. Prior to Curves closing she had registered around 900 workouts, most done in her seventies. I know few people of ANY age who are so diligent with their exercise and nutrition habits as my Mom. When she decides to do something, she does it, period. Without a doubt her strong willpower has served her well. I want her to know it has not gone unobserved.

A few weeks ago I asked my Mom to read a story I’d written for a short story competition. After reading it she sent me an e-mail saying she “loved it”. I asked her to tell me what she loved about the story. It wasn’t enough for me just to hear she loved it, I wanted to know why. I wanted to know she actually loved it, and was not just saying that without reason (except for being my Mom).

We live in a world where the word “love” gets thrown around frequently. Don’t get me wrong, that IS a good thing. I love pizza and can tell you why. I already told you a few blogs ago why I love yoga. Telling someone we love them has extra meaning when we let them know exactly what it is we love about them. According to palliative care experts, at the end of life what people most want to know is that their life mattered, had some meaning, and that they were loved. I don’t think we should wait for the end of life.

I love you Mom. Now you also know one of the reasons why.

If sleeping becomes an Olympic event, I’m going to win!

Should the subject of sleep and insomnia come up when Mr. Wanton and I are at a social event, he is sure to say: “My wife is the best sleeper I know. No one looks happier when sleeping than she does.” I never contradict him, nor will I ever argue it is not true. Instead, I have been known to reply: “Yes, if sleeping were an Olympic event, I would be the gold medal winner!”


(What Mr. Wanton thinks I look like when sleeping….yes, smiling.)

80% of Sjogren’s patients have persistent fatigue as a symptom, according to a recent Sjogren’s Syndrome Foundation study (2016), making it the third most prevalent symptom after dry eyes and dry mouth. It is such a common complaint, fatigue is now considered a “hallmark symptom” of the disease.

As I mentioned in my last post, it was indeed the first symptom I noticed, the one that lead to my repeated visits to the doctor as I sought to discover what was going on with my body. In hindsight, I had dry eyes and dry mouth at that time as well, but the progression was so slow I did not notice. Overwhelming fatigue and soreness throughout my body were much more difficult to live with, and ignore.

After a day of “dragging my carcass around”, as both Mr. Wanton and I like to refer to it, nothing brings me more pleasure than crawling into my bed. Admittedly, I am a creature of comfort come the end of the day. And I have a definite routine for how I get my tired and sore body comfortable at bedtime.

Before I use bathroom for the last time, and put my “eye goop” in, I heat a couple of “magic bags” in the microwave, then I crawl in to my bed which has the softest finest thread count flannelette sheets on top of a quilted faux down mattress cover. I just noticed I called it “my bed”; I do so frequently without intention, regardless of the fact I share it with Mr. Wanton because I guess it is just that important to me.

So, I climb into the king size bed, and roll on my right side (I have a phobia of going to sleep on my left side and feeling my heartbeat, since having some severe atrial fibrillation episodes at bedtime), putting a body pillow between my knees and against my torso, then I put the heated bags on across my low back + hip area. Then I put my head on my pillow which is the most incredibly soft pillow I could find, took years to get the right one but it was so worth it. I might love that pillow more than Mr. Wanton.

A few months ago at book club we read a dystopian novel. At one point during the discussion, the facilitator asked us: “if you had time to take only one item from your home, what would it be?” Without hesitation, I answered “my pillow”. Everyone looked at me, disbelieving, speechless. All I said was “I love my pillow”. That was my answer because I know if I could have my all-time favourite pillow and get sleep, perhaps I could survive the apocalypse. I’m surviving Sjogren’s, so why the hell not aim even higher?

For the most part if I have a “regular day”, meaning no extra or out of the ordinary activities, I can fall asleep relatively easily, the aches and pains of the day relieved by heat on my back and hips, the softness of my bed, comfortable bedding, and exhaustion leading to quick sleep for eight –nine hours without waking for more than seconds at a time to shift positions or add eye drops because I feel my cornea getting stuck to my eyelid, then boom, back to sleep immediately. I would like to report feeling refreshed and pain free when getting my full night’s sleep, but it would be a lie. I never feel rested no matter how long I sleep, or how soundly. Never. I begin every single day feeling tired, and sore.

I am one of the fortunate patients who is able to sleep. Many, many Sjogren’s patients report difficulty with falling and staying asleep for various reasons such as joint pain, dry mouth, headaches, restless leg syndrome, neuropathic pain, etc.

If I have a day with even one slightly non-routine activity that has added more soreness to my joints and muscles, I can have difficulty, and be awake for hours trying to get comfortable enough to ignore the pain and fall asleep. Sometimes, that involves using topical pain relief products or OTC pain meds (though because I also have autoimmune hepatitis I try to avoid them).

Mr. Wanton claims I “run around all day”, until I am “ready to drop”, then “jump into bed”. What he actually means is I move at a snail’s pace, followed by some sloth like hours prior to bedtime, then yes, I do drop into bed. His perception of me moving all day is not because of me running anywhere, but because I find being in ANY one position for any amount of time uncomfortable. I get stiff and sore. His scientific test for my amount of movement being abnormal is that I cannot sit still without moving, and if a TV program is more than half an hour I need to get up and move around, or do something to distract myself from the pain.

Often I have been asked if I nap during the day. The answer is no. I have attempted the art of napping, but never mastered it. I think my difficulty is falling into deep sleep rapidly, so upon waking from a daytime nap I am groggy to the point of feeling unwell. A friend in California told me her naturopathic doctor says if you are unable to sleep during the day, a period of even twenty minutes rest in a horizontal position is restorative for the adrenal glands. I have not researched to discover the truth of this information, but certainly rest periods are healthy and essential for me, and all other Sjogren’s patients I know.

Sleep may be what I love doing more than any other activity. I realize life is short, and hate to think I’m sleeping so much of mine away, but my body and mind crave it. Sleep is my escape from the fatigue and pain that plagues my every waking moment.

Coming soon: The best advice a Rheumatologist ever gave me; plus how do fatigue, joint pain, and muscle soreness limit my daily activities; how I cope with sunny outdoor activities; how my life has changed; and more.

P.S. I originally intended to blog daily for Sjogren’s Awareness Month but yesterday I was too tired, and too sore – my fingers especially were not happy, so I took a day off.

Python / Escape going to Poets Pub tonight!

Python / Escape are headed over to “dVerse Poets Pub” night tonight at http://www.dversepoets.com

“Python” was inspired by the line “tell me about despair” in the poem “Wild Geese” by Pulitzer Prize winning poet, Mary Oliver. I was inspired by that particular line, as well as her use of flowers or animals in her poetry titles/content.

Creative writing instructor/poet, Reinekke Lengelle suggested that I write a response to “Python”, thus “Escape” came several months later. For those who do not know Sheri-D Wilson, she is a published poet, spoken word artist, and writing instructor. Check her out at http://www.sheridwilson.com

 

I.

Python

The serpent lurks.

Harmless when

hidden among the tall fragrant grass

blades moving slightly

from the whisper of a breeze.

Waits patiently

for opportunity to strike

not suddenly,

but effortlessly,

coiling lazily,

moving upward

wrapping fourteen feet

of tourniquet body

around my soul,

tightening with each pass,

constricting,

compressing.

The vise grip of despair

holds me first, then

swallows me whole.

 

II.

Escape

Utter darkness,

nothing but the slimy

disgusting insides

of the snake

waiting to digest me.

I think of the bumper sticker “WWJD?”

“What would Jesus do?”

But then instead I think:

“What would Sheri-D do?”

Poet, warrior, goddess.

She’d slay this situation with her tongue,

Or pull an emerald embellished

pewter handled blade out

from her imagination,

slicing open the snake skin

with a sudden jabbing thrust,

then a long slide down,

freeing her body, mind, spirit

along with her voice

 

Copyright Suzanne Wood 2013.

 

No delusions of grandeur!

delusions of grandeur – a delusion (a false belief) that you are much greater and more powerful and influential than you really are

Although I am incredibly honored and excited to have some of my paintings and poems chosen for the InSight2 International Exhibition & Symposium, I do not suffer from any delusions of grandeur. In fact, I want people who go see my abstracts and read the poems that comprise my “Blue-Green Elixir” exhibit to think they can do it too. That was the whole point of my submission, that any artistic pursuit could have healing benefits for anyone suffering whether physically, mentally, or emotionally. I will be ecstatic if people see my art and decide “Hey, this looks pretty easy; if she said it helped her feel better, then I am going to give it a try too.”

“Blue-Green Elixir” is rough, amateur painting, as well as poems that are far from literary masterpieces. I have no delusions that they would be chosen for any other type of juried art show or literary anthology. It is however, my sincere hope that they may inspire others who suffer from illness or lack of well-being of any sort, to at least give art a try.

Here is a snippet about how “Blue-Green Elixir” came to be (from my submission):

Living in a rural area, hours away from a city, the option of attending a formal “Arts in Medicine” program, visiting a psychologist specializing in art therapy, or an “Artist in Residence” at a major hospital is usually not a viable option. At times the very nature of one’s illness may prohibit travel and engagement due to mobility issues, fatigue, concentration issues and so forth. For many patients not having ready access to arts / humanities programs presents a barrier to becoming engaged in experiences that could promote improved health and well-being.

It was my good fortune to stumble upon on-line writing classes through the University of Alberta Faculty of Extension that are taught by Reinekke Lengelle, a former writer in residence at the University of Alberta Hospital. The on-line delivery allows an individual to work on their projects when they feel best, ready to engage with their learning community. In addition to the discovery that the very act of writing itself is indeed “good medicine”, the creative writing courses allowed me the opportunity to develop on-going relationships with others not just coping with illness, but thriving creatively in spite of it!

“Blue-Green Elixir” was chosen as the title of my exhibit due to my recent experience at a weekend painting workshop given by artist Rose-Marie Cameron. It was an event open to the general public, and one that I had long hoped to participate in. On the second day of the workshop, one of the other participants asked me if I realized I was always using blue and green in my paintings. I told her I had tried the reds and yellows but they left me ill at ease; I craved blues and greens. I did not explain further. I had discovered that the blue – green colors as much as the creative process itself, were soothing and calming me, lessening my symptoms.

I have learned that the blank page or canvas can be witness to my anxiety, grief, and pain, lessening my symptoms and easing my mind. Colors can soothe, words can heal.

 "Blue-Green Elixir"

Painting above, “Blue-Green Elixir”, is actually not in the exhibit because the canvas was damaged. Thought I’d give you a peek of my work. Next post I will reveal a secret about my “technique” that may surprise you!