Best advice ever from a Rheumatologist – you don’t even need a disease to benefit!

I will be ever grateful to the Rheumatologist who first diagnosed me with Sjogren’s in 2002. He finally put a name to the symptoms I’d been suffering from for at least a decade, and validated my concerns. However, I did not realize at the time, he was not very knowledgeable about the potential severity of Sjogren’s, or its treatment. In fact, he told me nothing of potential organ involvement, increased lymphoma risk, and other more serious consequences that could occur in years to come.

Upon diagnosis he explained I would require vigilant use of sunscreen and to stay out of the sun as much as possible (due to presence of the SS-A antibodies in my blood causing extreme sun-sensitivity), use over-the counter eye drops for my eyes and dry mouth products for my parched mouth if required. That was all. He did not address the fatigue, or the muscle and joint pain whatsoever.

I told him I had been keeping up with light exercise – a bit of walking, “Curves” gym workouts, and day-to-day housekeeping activities even though they wore me out. I asked if there was something, anything, he could give me to help with the pain, especially muscle pain which was more prevalent at that time, than joint pain. After all, it was those complaints along with the unrelenting fatigue, which brought me to the doctor over and over, not my mouth, eyes, or skin.

I did not expect to hear what he said next: “Actually, I have some patients who have told me that yoga has helped their pain more than anything else.” All I said was “okay”, thinking we had no yoga classes in the small community where I lived, at that time. I could do it on my own, but I thought I would just continue with Curves, and get regular massages which were soothing but had short-lasting results. So that is what I did, continued on with what I had been doing.

Eventually, after a few years I had trouble washing floors, scrubbing bathrooms, etc. without ending up stiff and in pain, leading me to regular physiotherapy visits. We hired a weekly housekeeper, which was cheaper than physiotherapy so I did not feel guilty but I still found my body getting very sore. Soon I was back to physio even though I was no longer doing household chores.

One day when going to the bank, I saw a new sign in the window of the same building: “Yoga for You”. The words of the Rheumatologist seven years earlier were suddenly back in my mind. By this time, yoga (thanks to Lululemon yoga pants! ha ) had gained mainstream popularity even outside of cities. Still, after spotting the sign I continued to walk and drive past it for about a year, thinking I could never do yoga with my tight sore muscles.

Finally one day, I decided to go in to get information about the classes, to just give it a whirl. I don’t recall what was in my mind in that moment, why I decided to try. Perhaps I was in so much pain I was desperate, or maybe it was a relatively “feel good” day and I was optimistic I could do yoga after all. Either would be plausible. The owner / instructor / yoga therapist – Tracy, was welcoming. She recommended “Gentle Restorative Yoga” as being best for me. It was time to test out the Rheumatologist’s advice.

I’d like to say I went to my first class and found it pleasurable, but I did not. The session started out easy enough – on the mat, but then we sat along the wall. Tracy said we could sit with our legs in any position. I saw some people sitting cross-legged so I did the same as we began to stretch our neck, with our head and back supported against the wall. Within 15 seconds of sitting cross-legged my hips were screaming. Tracy had said to “listen to your body” at the outset. My hips were definitely hollering “get out of this position”, so I stretched out my legs. Relief. When my body was not launching a protest during the first class, my mind was racing with thoughts. I had true “monkey mind”, as yogis call it. There were however enough positions, including Child’s Pose, Heart-Opening, and others in which my body was supported enough by a bolster, blocks etc. so I could actually relax and release into the pose. Again, I felt relief.
Though my first class was not as gentle on my body as I hoped, ever the optimist, I decided I would sign up for one session of several weeks to see how my body would respond. That one session of one hour per week, has now turned into two, hour and half classes, per week. I have been attending classes regularly for over six years now.

Additionally at home, every morning before I even get out of bed, I do 20-60 minutes of gentle restorative yoga poses to alleviate some of my morning joint stiffness, and muscles aches. Though I enjoy doing the poses at home, the yoga studio is where my body and mind respond best. It has become a sanctuary for me. Just entering the studio I sigh to let go of the rest of my day, breathe deeper, and relax. Instead of 15 seconds sitting cross-legged, on a good day, I can now do 15 minutes. Some days my “monkey mind” is busy for more than half a class, but sometimes I can let the thoughts come and go easily until they disappear completely, allowing me to focus only on my breath. My breathing is deeper, slower, and from my “belly”. An echocardiogram tech recently said during my echo, “wow, you are a good breather”; I knew why and couldn’t suppress a grin.

The Rheumatologist’s advice (well actually it was his patients’ advice  – love and light to you all) was right – yoga is helping me with my Sjogren’s symptoms more than anything else. Though I still have pain, it is so much less if I keep up with my yoga practice (when Tracy takes vacation break I do feel the difference). And on the days the soreness is less tolerable, yoga has also given me the mental coping skills to let go, and just focus on breathing from my “belly” to relax. Yoga has been life-changing for me. I cannot imagine my life without it.

“Yoga teaches us to cure what need not be endured and endure what cannot be cured.” B.K.S. Lyengar

 

Note: As with searching for a doctor who is a good match for your needs, so it is the same with finding a yoga class with “goodness of fit”. Don’t go to what I call regular, basic class – “pretzel yoga” – if you need props and gentle poses at least to start off with. If you think yoga may be helpful for you, do not be discouraged if the first instructor, class, or studio environment is not meeting your needs – try another and another. Listen to your body, it will tell you when you have found the right one.

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.

Road to Sjogren’s Diagnosis was Exhausting

Endless, unrelenting fatigue and sore muscles were the symptoms that first had me seeking help from the doctor, followed by joint pain not long after. I began discussing these complaints with my family doctor in the early 1990s. At the time I had three young children at home; I worked full-time, and was a volunteer involved with my children’s extra-curricular activities.

Although these symptoms started mildly, they became a source of concern as they continued to escalate in severity despite my healthy lifestyle. I did not drink or smoke, slept really well for eight hours per night, ate nutritious meals, and got regular exercise. Still I did not feel well. My doctor told me I was a busy mom, and hence my fatigue and soreness. He did a few blood tests to ensure my iron levels, B12, and the basics were all okay, all came back normal. He said I did not have Fibromyalgia, nor did I have chronic fatigue. I believed him, but I also knew I was tired and sore all the time. Something was not right.

In desperation to get relief I went to physiotherapy. I told the therapist about my soreness and fatigue and asked if she could possibly provide treatments that might be helpful. After listening carefully, she asked numerous questions, finally ending with, “Have you ever been tested for Lupus?” I explained I had requested testing for autoimmune connective tissue diseases but the doctor assured me I did not have Lupus, or Rheumatoid Arthritis, which by this time was my biggest fear. She told me to go back and ask again.

I did, and he again refused. He assured me he believed I had the symptoms, he did not think I was imagining them (so he told me to my face but I wonder if perhaps behind my back he did think I was), however the symptoms were of no concern. Maybe to him they were not, but they sure were to me. Finally he sent me to an internal medicine specialist, I found out in hindsight he wrote a letter to my family physician saying I was just depressed. By this time, he was right, I was becoming depressed because I knew there was something wrong yet he was making me feel like I didn’t know my own body and what was normal for me to feel.

So, because of what the physiotherapist had said, I sought out a different doctor at a clinic I had never been to. He listened, and then said he’d like to run numerous blood tests before we discussed the possibilities further. A couple lab tests came back positive; he set up a referral for me with a Rheumatologist immediately.

The first appointment with the Rheumatologist was rather brief, he did check my joints, and assured me I did not have Rheumatoid Arthritis, that I had great range of motion and strength, and most importantly no swelling. Most of the rest of the appointment was spent with him asking me questions about my family health history as well as my own. He asked me about my work and home life. I honestly think because I was still doing all my regular activities he dismissed the possibility of anything being seriously wrong. In fact, he said so. He assured me I was perfectly healthy, had nothing to worry about, and by all means I should continue to do all I had been doing. “But”, he said “I will just run a few more highly specialized tests to be sure, but go home and don’t worry, I’m sure they will be fine.”

Two weeks later, he called me and said he needed to see me at his office again, three hours away in the closest city to where I live. This time he did a very thorough examination, starting oddly, I thought at the time, with my mouth. After the physical exam, he told me I had Sjogren’s Syndrome. Both the SS-A and SS-B antibodies were found in my blood along with positive ANA and RF. I definitely had Sjogren’s Syndrome. He explained it was nothing to worry about. I was thrilled. I really did have something wrong with me; I had not been imagining it. He explained Sjogren’s was nothing I really needed to be too concerned about, except staying out of the sun as the SS-A antibodies were linked to sun-sensitivity that could trigger further disease activity. I heeded his advice, was fastidious with the use of sunblock and avoided the sun during peak hours.

Little did I know at the time, he, like many other Rheumatologists did not know much about Sjogren’s. I was excited to have a name for what I had been suffering with, since it was now May 2002, just weeks before my 40th birthday. Approximately ten years had passed since I had begun mentioning the fatigue and pain I had. I remember telling my long time family doctor, “I could go to sleep anywhere, anytime, and sleep and sleep and sleep, all I need to do is lie down.”

Recently the Sjogren’s syndrome Foundation has acknowledged not just dry eye and mouth as “hallmark symptoms”, but fatigue and joint pain as well. May I join numerous other Sjogren’s patients in saying: FINALLY!

In upcoming posts I will explain how the fatigue and joint / muscle pain has affected my life, as well as the best advice a Rheumatologist ever gave me.

To learn more about the diagnosis of Sjogren’s and the 13 types of fatigue experienced click on the following links:

Multiple Tests Required to Diagnose Sjogren’s

13 Types of Fatigue Sjogren’s Patients Experience

Sjogren’s Quickie: Dry Eyes Q&A

Writing a 500 word blog post each day is perhaps a bit much for me…more on Sjogren’s fatigue another day when I am not so – you guessed it – tired. So, in between longer posts I will answer questions, or post a mini-blog.

I promised to answer the questions I was asked a couple of days ago regarding Sjogren’s and my eyes, so here you go:

Does it come on with age?

I am not sure if the person meant Sjogren’s in general or the dry eye issue specifically. Overwhelmingly Sjogren’s affects women, less than 10% of those afflicted are male. And 2/3rds of Sjogren’s patients are over the age of 60 at diagnosis. It used to take over ten years for diagnosis on average (that has been brought to below five years now), so average age at diagnosis may not tell the entire story, if it took someone more than ten years to get the diagnosis. Though the majority of patients are older women, Sjogren’s can affect anyone of any age, including young children. I believe I had Sjogren’s already as a teenager, yet I was not diagnosed until the age of forty.

As far as the eyes specifically, each patient is unique in their constellation of symptoms and the onset of each, but typically dry eye is extremely common. In fact, in a recent study in the USA 92% of Sjogren’s patients had dry eye as a symptom, the highest incidence of any of the symptoms – tied with dry mouth. It is considered one of what they refer to as “hallmark symptoms” of Sjogren’s, because it is the most common.

Are the eye drops, gels, ointments, etc covered by your health plan?

We have two different health plans (which we pay for ourselves since my husband is self-employed) and neither cover any of my eye drops or ointment, not even those prescribed by optometrist / ophthalmologist. The lack of coverage for the over-the-counter products used by Sjogren’s patients is a major complaint. It is similar to diabetics having to pay for blood glucose testing strips; they are “essential” yet not covered by health insurance (at least not in my locale).

Does it affect daily vision?

Yes, it can and it does simply by reason of a dry eye being an irritated eye. If you have ever had light dust blow in your eye while outside, that is similar to the feeling of a very dry eye, hence the importance of eye drops, gels, ointments, etc. Some patients even wear special goggles at night, or in the house during daytime, in an attempt to preserve any moisture in their eyes.

If you prep your eyes for the night before you go to sleep, what happens if you wake up to use bathroom or you need to get up during night?

I just do same routine as in morning – gentle rub of lid to protect cornea- go to bathroom – put more drops / ointment in after. I know my way to bathroom in bedroom well enough in dark, and fortunately I don’t often wake up to use bathroom after I am asleep. When my eyes are “gooped up” I can still sort of see, somewhat like through fogged up ski goggles. My vision is very blurry, but I’m able to make it to bathroom as I have no “hazards” on route. And the goop doesn’t last entire night, which sounds like a good thing but actually it is not because sometimes my eyes get so dry during the night I actually wake up because I can feel the lid sticking to cornea, pulling on it.

Honestly, at this time my eye regime is quite simple compared to that of many Sjogren’s patients. Other types of “remedies” include: artificial tear inserts, a prescription medication – Restasis, tear duct (punctual) plugs, moisture shields, etc. There is also something called “serum tears” which is not yet mainstream, being produced only in select laboratories. Serum tears are produced from the patient’s own blood, with the red blood cells and clotting factors removed, then bottled. If you would like to learn more about Sjogren’s and dry eye here is a link below to get you started:

Dry Eye Info from the Sjogren’s Syndrome Foundation

Sjogren’s: Nuisance or Big Deal?

I have been thinking a lot about whether to write about Sjogren’s this month, wondering if perhaps the people who know me already knew enough about Sjogren’s. If people were wanting to know more they could just Google and get plenty of information that way, especially if searching for the Sjogren’s Syndrome Foundation or Sjogren’s Canada. Another reason for my uncertainty was because I didn’t want my blog to become focused solely on Sjogren’s.

I suspect some readers may be thinking I write about my own experiences with illness to garner attention or sympathy. Many people, including some health professionals, believe Sjogren’s is just “not that big of a deal”. Often people tell me I could have a disease much worse than Sjogren’s. That is true. Are there worse diseases to have? Of course; ALS comes to mind first off, but there are many others. I currently have people I love being treated for metastasized cancer; others hospitalized with other autoimmune illnesses fighting courageous battles to regain some semblance of health. I understand the reality of more severe illness, but I also want people to be aware that Sjogren’s is not a simple, relatively benign disease, just a nuisance.

Several years ago a study was done comparing quality of life for patients of various chronic and / or progressive diseases – Sjogren’s was on par with Multiple Sclerosis for impact on day to day life. Using eye drops is a mere inconvenience compared to many other aspects of the disease. Sjogren’s can progress to affect organs such as the liver and the lungs. Many of the treatments for Sjogren’s and related complications are chemotherapy and biologic drugs, “heavy hitters”, also used for cancer treatment or to prevent rejection after organ transplants. (It should be noted that there currently exists no specific treatment protocol for Sjogren’s as there is for MS or RA.)

Yesterday after blogging about one specific and minute part of my Sjogren’s journey, my eye care ritual, I realize I do need to continue to write about Sjogren’s. Not just the facts and “bones” of what it is as can be found on many medical websites, but the human experience of my journey. I can tell you from my brief time in a Sjogren’s on-line support group, though sharing the same disease and many of the same symptoms, every patient has a unique combination of symptoms and treatment.

Thank you to those who read yesterday’s blog post and made comments, or asked questions on my Facebook page, you have shown me there is still more for me to tell about Sjogren’s. If you look in one of a very few books about Sjogren’s, or on-line, you can quickly discover what tests they can do when looking at your eyes, and some possible treatments. From the responses I received yesterday, I realized yes, a book can tell you Sjogren’s patients use eye-drops daily, but that doesn’t really tell you what that actually means day-to-day. Over the next month I hope to help you understand what it is like for me to live with this chronic, incurable, progressive disease.

Click on text below to view brief video:
Excellent 3 minute TV News Interview with a Patient + Dr.

I wish it was just an April Fool’s joke….

Waking this morning, my first thought before even opening my eyes was: what day is it today? Which was quickly followed by Saturday – April 1st – April Fool’s Day – also the first day of Sjogren’s Awareness Month.

I was then awake enough to roll over and open my eyes. But before opening my eyes each morning, I first must, ever so gently, rub each of my closed eyelids with a finger. Massaging lightly over the entire surface of my closed eyelid allows it to delicately detach any part of the lid that might be stuck to my cornea due to night time dryness. To most, this would seem a ridiculous and unnecessary activity prior to getting out of bed, however it is crucial for me. After numerous painful rips and damage to my cornea due to dry eyes caused by Sjogren’s Syndrome, I finally remember never to just pop my eyes open upon waking.

Immediately after getting my eyelids open, I reach over for the eye drops on the night table plopping a couple drops into each eye. I do this with a great deal of care as well, not because it is an intricate procedure but because eye drops are so damn expensive they might as well be liquid gold so I dare not waste a single drop with poor aim.

After putting the drops in, my vision appears as though clouded due to light fog permeating the house. There is no fog, and my vision is fine, but the drops I use first thing in morning are to replace the lipid layer in my eye which several years ago the optometrist told me was nearly non-existent. The drops look like milk, and contain lipids which most simplistically are fats, vitamins, and other things that help preserve eye surface health. While I wait for the foggy white vision to dissipate, I sip on a bit of water to quench my dry mouth, and do gentle restorative yoga while still cozy in bed.

Throughout the day I replenish and refresh my eyes a multitude of times with another type of drop which is even more expensive but is lighter and within a few blinks does not cloud my vision. Before going to bed at night I coat my eyes with an ointment prescribed by a specialist which I need to prevent cornea rips during sleep. After the ointment is in and has coated my eye surface, I add a couple drops in each eye of yet another type of eye drop this one a thick gel. I have become fastidious regarding my night rituals, since as you can imagine once my eyes are “gooped up” for the night, all other activities requiring vision must cease.

So why, you may ask, am I telling you about what I do to my eyes? Well, my realization it was both April Fool’s Day and the start of Sjogren’s Awareness Month, also had me wondering what if Sjogren’s was all just a big joke (albeit a perverse, nasty mean one)? How wonderful to wake one morning, maybe even today, to discover it had all been a bad, bad dream. I knew that to be sheer fanciful thinking; I didn’t take the chance to pop my eyelids wide open, risking a tear. It did give me pause for thought though – how would my life be different if I didn’t have Sjogren’s? I can only imagine, but for this month instead of thinking of “what might have been”, I will share with you my “what is”.

P.S. Obviously this website is hosted/shows time on the other side of the world from me, as I see the date as already tomorrow. Time flies fast enough, I don’t like them showing me today is already over when it is’t where I live, and isn’t that all that counts? 🙂

Pumping the brakes on perfectionism…

“The greatest mistake we make is living in constant fear that we will make one.” ~ John C. Maxwell ~

A little more on perfectionism today because it is why I avoided writing the last week or so. The avoidance began after being involved in a discussion about published books and famous authors.

The discussion started after a friend discovered a mistake in pronoun use in a New York Times best-selling novel. I mentioned I was surprised such a mistake had made it past the editors at a large reputable publishing house. All were in agreement.

The talk then turned to mistakes writers make. Another friend mentioned she is appalled when writers use “comma splices”. Everyone involved in the discussion then began to detail errors they have seen in published books. I stood silent.

As the group broke up for the evening, all I could think was: I do not know what a “comma splice” is, oh my God, and I think I’m a writer? I’m not a writer, or I would know what that is.

I drove home pondering if I should continue to write or give it up completely. To be honest, I was ready in that moment to swear off writing forever. (I had done so once before, after a grade 12 English class with a teacher who terrified me. That swearing off of writing lasted twenty years or more.)

This was also not the first time in more recent history I was having anxiety over my writing. I have Facebook “friends” who are published poets, authors, high school and college level English instructors, spoken word artists, lyricists, Ph. D university professors and creative writing instructors, journalists, and English literature majors. The thought has crossed my mind many times that my writing is not up to their standards, and absolutely I admit it is not.

(Even writing the previous sentence I am thinking: I used the word “that” again. Oh no. I am just proving my own point. Of course I am not a “real writer”.)

The next day a friend who is in my writing group phoned me.  I confessed the anxiety I was having because of what occurred the night before. She started laughing and assured me I probably DID know what a comma splice was, I just did not know it by that term. Thanks my friend, I needed to hear your encouraging words.

I took a deep breath; I realized as a reader it is not perfect grammar, punctuation, classic structure, or extensive vocabulary which catches my attention, rather it is authenticity. Granted there are certain standards to be upheld in writing, as in all communication, but I can be forgiving of writers who make some errors if what they have to tell me is authentic. If a piece of writing resonates with me I don’t care if it’s in the form of a cartoon with word bubbles and thought clouds, or a poem with no structure or rhyme.

If I can be forgiving of other writers making mistakes, so must I be forgiving of myself. Part of why I named this blog as I did is because I do want to be wanton, both playful and a bit reckless in my writing. Maybe all along I wanted to send a subliminal message to those seeking perfection in writing – this would not be the place to find it.

 

P.S. “A comma splice is the use of a comma to join two independent clauses. For example: It is nearly half past five, we cannot reach town before dark. Although acceptable in some languages and compulsory in others (e.g. Bulgarian or French), comma splices are usually considered style errors in English.”

the two “P” words….

Can you think of two words that start with “p” and fit together perfectly?

And no, all you innately sexual creatures, once again, I am not thinking of “that”. Remember, I told you before, this is not the place for sexually wanton writing, yet somehow ever since I said that, innuendo continues to appear.

The two seldom verbalized or admitted, but often practiced words, are the reason I have been away from my blog the last seventeen days. Of course I’m referring to procrastination and perfectionism. Usually when I am away from my blog for awhile it is because of one or the other, or both.

Recently I wrote a 2500 word short story for a timed international writing contest, NYC Midnight. One of my Underground Writing Cohort friends had tempted me to give it a whirl. I had a week to complete and submit the story after being assigned a genre, character, and a specific subject to be included.

Thanks to doing the story for the contest I became more self-aware. I discovered I can procrastinate perfectly. I never considered myself a perfectionist before. I now realized I was obviously wrong.

To be fair, the first three days I did have a migraine headache. Apparently people who have Sjogren’s are also prone to migraines at a more frequent rate than other migraine sufferers; hooray for us. Mine start by feeling like a vague sinus headache then build up to full frontal facial pain for three days. Needless to say pain encompassing my entire face is not conducive to my creative pursuits. So, right off the get go I was down to four days.

While I wasn’t sitting at my computer typing out my story I WAS doing what I do best – writing the story in my head. I told Mr. Wanton it would be extremely helpful to me if he, of technological expertise and mechanical invention, could possibly come up with something that could transcribe my thoughts automatically into a word document on my computer. You know, like verbal word transcription, but for my thoughts. He said “that is a bad, bad, idea.” What does he know? Oh yah, I usually tell him what I am thinking. Perhaps his opinion is of value in this instance.

Upon the end of the headache I should have been ready to type up my story, right? Wrong. For the next few days I proceeded to attack my long lost to-do list with a vengeance – the one that sits permanently on my desk, with items dating back to 1999, not all of which are crossed off yet.

Wow – more self-awareness – if I wanted to finally accomplish my least appealing tasks, the long overdue “leftovers” on my to-do list, all I had to do is commit myself to something I wanted to do even less, in this case the short story.

Perfect. I could put off the short story writing, not feeling guilty whatsoever, because I was getting lots of other stuff done. You know, important stuff – like organize my panties and socks, look up random symptoms via Google, watch Adele and Bruno Mars “Careoke” videos on YouTube repeatedly (okay, admittedly that wasn’t on my to-do list but in hindsight it should have been). I accidentally discovered the most seriously underrated motivational technique for overcoming procrastination ever.

So that brings me to this moment. How did I get over my procrastination to write a blog post today? Easy answer, the alternative was the now top priority item on my to-do list – personal income tax. Uh-huh, I definitely found what I can do perfectly every time.

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P.S. In case you are curious, I did complete the short story in eight hours on the seventh day, well before the midnight deadline.

Heartfelt but not Hallmark…

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Valentine’s Day always has me awash in mixed emotions. I suspect I am far from the only one who feels a pull between celebrating, ignoring, or simply acknowledging February 14th.

The cynics say it is just another “Hallmark holiday” – a day that is commercialized to increase sales of certain items such as cards, chocolates, lingerie, champagne, wine, diamonds, and dinners out. Of course, that is true. But, I dare say, the day should not just be for couples who are lovers, sweethearts, or life partners with fat wallets. It can be a day for anyone to remind someone how much they are loved.

If one strictly looks at the day in a romantic sense or in the commercialized way of what one is “supposed” to do, it is easy to become cynical. Viewing it by that definition opens one up to guilt, expectation and even comparison, all feelings we best avoid as no good will come of them.

Mr. Wanton and I used to celebrate Valentine’s Day every year, until his Dad died on that date about twenty-five years ago. The year after the death, I no longer received flowers, we did not go out on a date, and my funny but loving card went unreciprocated.

I was devastated, but pretended it didn’t matter. I made a delicious dinner for us at home, reminding myself what mattered most is that we loved each other and we were together. We never talked about his Dad’s passing then; we still don’t today.

Over the years following his Dad’s death I waited with anticipation for when we would return to our previous traditions of celebration, but it has never happened. Initially, I was hurt because I felt as though I was being punished for something I did not do.

My husband blames our lack of celebration and festivities on February 14th to having three sons born approximately nine months after Valentine’s Day. Mr. Wanton thinks it is hilarious to tell people he used to buy me champagne and roses every Valentine’s but after having three kids as a result of it, he had to put a stop to it.

I don’t laugh when he tells the story. I wish he could speak the real reason, but he can’t. Initially I went out of my way to attempt making February 14th a happy day, choosing just the right card for him, making a special dinner at home with some of his favourites, but then I stopped. Today will be a regular day for Mr. Wanton and I. That’s okay.

So what is the point of this tale of woe, with a seemingly “poor me” theme?

Well, this morning as I woke up and thought about what day it was, I thought about everyone who may not be having the fairy-tale Happy Valentine’s Day “as advertised”. I know there are people at this very moment who are feeling forgotten, unloved, and unworthy. You may be one of them.

I want you to know you are not alone, and you alone are “enough”. I want you to keep your heart soft, even if it hurts. Please don’t let it become hardened. If you don’t have someone to love today, do something you love. I want you to remember even on days you may not receive love, it is still yours to give. Give generously.

xoxoxox

I came out of the closet at book club. #BellLetsTalk

I belong to the book club at the public library, a welcoming and eclectic group of women aged from twenty-something to seventy plus. The group consists of stay at home moms, retired teachers, a retired therapist, a hairdresser, small business owners, office administrators, a power engineer, a librarian, school counsellor, and a candlestick maker. Ok, not really, no candlestick maker, but people from all walks of life. We welcome men to our group, however only one has ever shown up, mostly he ate cake and then fell soundly asleep (thankfully he did not snore). To show you how polite we all are, not a single person snapped a photo while he dozed under the brim of his cowboy hat.

Being open to members of the public, most of the people are strangers to each other upon joining the group, save for the few who came together in the safety of a pair. Books are selected by the members in rotation throughout the year. As you can imagine the selections are as diverse as the members. Over the last couple of years we have at times made comment that we hadn’t ever read humorous books. I made it my mission to find one as my selection to kick off our new season in September. I chose Jenny Lawson’s memoir: “Let’s Pretend This Never Happened”. All I knew about it prior to selecting it was that it was supposed to be hilarious (I love funny) and her Dad had been a taxidermist (I love animals both alive and dead, but mostly alive). I did not know she suffered from a mental illness.

It would have been nice if someone had tipped me off to the number of f-bombs Lawson drops, since we have some “church going women”, well-mannered ladies who I was sure would not be amused by the profanity. But as I said, we meet at a public library, so in keeping with my own no-censorship and “freedom to read” ideals I didn’t skip out on the gathering to discuss the book even though I knew there would be people who would not appreciate my selection. I was not too concerned, as only once in our many year history was there a difference of opinion so profound I thought perhaps two people might succumb to fistacuffs. (Yes, that’s real word – consult the urban dictionary.) The book being discussed was “Eat, Pray, Love”. While two ladies went at it over whether Ms. Gilbert was selfish or not, the rest of us ate, prayed no bloodshed when ensue and loved the short-lived bit of drama unfolding before our very eyes that had never occurred before (or since).

The night of my selection I was nervous about how people would respond to the book (and tragically I admit, of course what they’d think of me being the one who had chosen it), but with the exception of two people out of about fourteen they thought it was funny, claiming to enjoy it. I suspect those who hated it the most, or were repulsed by the language decided to stay home watching re-runs or reading Jodi Picoult. (Story for another day: “How I trashed Jodi Picoult at book club in 2013”. Something I realize I should never do until I write and sell as many millions of books as she has.)

Anyway, as the discussion went round and around the circle I found myself bristling inside. It seemed, and maybe it was just my perception, that some people did not understand the reality of living with anxiety and the obsessions and compulsions that can happen as a result. They didn’t get that sometimes a person has to laugh at themselves and their eccentricities so they don’t cry. How Ms. Lawson described anxiety was accurate.

Suddenly I found myself blurting out “I have anxiety – medical anxiety – and this book made me feel better – it made me feel kind of normal.” I think I saw recognition and empathy in a woman’s eyes. I pretended not to notice. I was conscious of not drawing attention to her. I wanted her to say: “You know what? I do too”. I wanted anyone to say “me too”. No one did. I understand. I had not intended to tell anyone that night I suffer from anxiety. I think Jenny Lawson’s honesty, courage, and humour inspired me to finally come out of the closet when I least expected to. But you know what? I am glad I did; it felt good to let the secret out.

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I decided to write this story in honor of #BellLetsTalk day January 25th, the day when Bell donates five cents to mental health initiatives every time the hashtag #BellLetsTalk is used on social media. Over the years the campaign has generated nearly 80 million dollars while encouraging those with mental health challenges to come forward to tell their stories, and to educate those who don’t have such struggles so they may understand and be supportive to those who do.

For more information on Bell Let’s Talk go to: http://letstalk.bell.ca/en/bell-lets-talk-day

Visit Jenny Lawson’s blog at: http://www.thebloggess.com

An older post I wrote just about the book club I belong to:https://wantonwordflirt.com/2013/11/19/book-club-tonight-2/