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

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

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

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

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

bra betrayal

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

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

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

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

I laughed.

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

Now we both laughed.

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

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

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

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

And now I wonder, will I?

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

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

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

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

Top 3: The best things doctors ever said to me…

If you have been reading my blog from the outset, or read my story in Christine Molloy’s book “Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjogren’s Syndrome”, you might assume the best thing a doctor ever said to me was they definitely knew what was wrong with me.

Believe me, the day my first Rheumatologist told me I definitely had Sjogren’s I felt immense relief and a sense of calm. As memorable as that day was, the Rheumatologist’s words did not make my top three list. My top three are comprised of short sentences uttered by three different general practitioners, or family doctors, primary care physicians, or whatever word du jour they prefer these days.

Here they are in order not by significance, because I give all three equal weight, but in the order in which they occurred:

1. It’s unfair you got sick. My long-time doctor of twenty or so years said this to me at the first appointment I had with him after getting my diagnosis of Sjogren’s. I had to go tell him of the diagnosis myself, as he was not the one who had referred me to the Rheumatologist. He had insisted that I did not have Lupus or any other autoimmune connective tissue disease; hence he refused to test me. After a physiotherapist emphatically suggesting I be checked for Lupus, I went to a doctor at another clinic to describe my symptoms. It was this doctor who had never seen me before who sent me for blood work as he thought I should be checked for “Rheumatoid Arthritis and related diseases”. Blood work showing high Rheumatoid Factor (RF) is what led to a Rheumatologist referral, further testing, and ultimately a diagnosis.

When I told my usual doc of the Sjogren’s diagnosis, he said: “I am sorry”. I did not ask for further explanation. His face told me he truly was regretful. I assumed both for me having Sjogren’s, as well as because he did not pursue or make the diagnosis himself. Next he told me it was unfair I had become ill, as he knew I led a healthy lifestyle – eating right, not drinking or smoking, getting rest, exercising. Being raised Catholic, I am infused with guilt and self-blame when bad things happen. I needed to hear the doctor say it was unfair I got sick; it was not my fault. I needed to know I didn’t cause Sjogren’s because I should have eaten more carrots and less pizza, swam 64 laps a day instead of 32, and never miss church on Sunday. Sometimes “shit happens” no matter how healthy you were before, no matter what you did or didn’t do.

2. You are courageous.” Not long after my Sjogren’s diagnosis my long-time doctor retired from general practice. I again returned to the other clinic to see the doctor who initially sent me to the Rheumatologist. Unfortunately, seven years after my Sjogren’s diagnosis I had blood labs that showed extremely elevated liver function tests. Without delay, the doc sent me to a Heptologist, who diagnosed me with Autoimmune Hepatitis. Yes, again another disease I, nor anyone else I knew, had ever heard of. Unlike Sjogren’s, AI Hep has a standard treatment protocol, but it too is incurable. Without treatment AI Hep is quickly progressive, advancing the liver from inflammation to fibrosis to cirrhosis then death. The standard treatment protocol begins with high dose Prednisone which is then tapered, but continued at a set dose for a full year, to be followed by Imuran, an immune-suppressant chemo class drug most commonly known as being given to kidney transplant patients to stave off organ rejection.

In my mind, there was no choice. I would do the treatment as prescribed. I wanted to live. The liver specialist was clear on the numerous negative effects the treatment could have on my health, how it could damage my body in other ways while helping my liver. Because of the dual personality of Prednisone, the good and the evil, I called it “my miracle poison”. At the time the specialist prescribed it, he did not inform me how difficult it is for many patients to wean off Prednisone entirely, but my local doctor did later. As I was tapering off Prednisone, while initiating Imuran at the same time, my doctor looked up from my file and told me I was courageous. Tears instantly filled my eyes. No one said that to me before; ever.

3. It sucks balls. More recently, in 2016, I spent several hours through the night hooked up to a cardiac monitor in the ER of our local hospital while having an episode of atrial fibrillation. Some people who have this do not even know it is occurring, especially the elderly and those with weakened hearts. I have had three episodes thus far; each one was sudden and beyond ignoring. Within seconds, my heart rate triples, blood pressure escalates, and my heart strongly pounds out of rhythm; you can see my shirt move as my heart flops in my chest. Prior to this episode I’d had another lasting from midnight to 8 a.m. when shift change came in successfully cardioverting my heart back into rhythm. It was done chemically via an IV infusion, but sometimes the paddles are used to shock a person’s heart getting the same result. During the 2016 episode they again tried cardioverting with the same drug that worked successfully the first time. I was not so lucky, I did not convert though my blood pressure and heart rate did diminish, they did not return to normal nor was my heart in normal rhythm.

The doctor who was in charge through the night decided I was going to be released with my heart still in a-fib. I was devastated to hear I would be taking oral medication to cardiovert, and sent home, my heart pounding out of rhythm for who knows how long. I was overwhelmed. I wondered… were not Sjogren’s, Undifferentiated Connective Tissue Disease (with symptoms of both Lupus + Dermatomyositis), and AI Hepatitis enough? The thought of having yet another complicated medical issue, especially after a night of no sleep and anxiety, was too much for me emotionally. As I sat propped up on the bed, alone in the room waiting for the nurse to remove my IV so I could leave, the doctor coming on for day shift came to my bedside. It was a young female doctor I had never met before. After introducing herself, she too explained I would be going home “as is”. Tears began to roll down my face. I told her I was crying because I was overwhelmed….having Sjogren’s, AI Hepatitis, and UCTD I thought I had “enough”; now I had to deal with a-fib too. She put her hand gently on my arm, looked into my tear filled eyes and said matter-of-factly: “It sucks balls.” I burst out laughing. Through more tears, I said: “Yes, it does.” What she said was unprofessional, immature, and entirely inappropriate; it was also perfect.

My Doctor Fantasy (Spoiler Alert: Nothing to do with Dr. McDreamy)

Thinking about what my blog topic might be today as we near the end of Sjogren’s awareness month, I began to make notes about the guilt of being ill, missing out on events, letting others down and the self-loathing that may accompany chronic illness of any sort, both physical and mental.

Shortly after making my notes, my son arrived with the mail which contained a letter for me indicating a date for a follow-up appointment with a specialist in the city closest to where we live. Unfortunately, it is not close. The hospital that I go to for specialist appointments is three hours from our home. I have a Rheumatologist, Cardiologist, Dermatologist, Neurologist, and Heptologist / Gastroenterologist all at the same hospital.

The letter from this particular specialist had a triggering effect. Emotions I thought were long dispersed bubbled to the surface; lava out of a dormant volcano.

I saw her for the first time last July for a consult after I had been for an overnight emergency room stay at our local rural hospital. I’d previously been seen in this particular hospital out-patient clinic by a kind, compassionate Nurse Practitioner, in whom I had the utmost trust and confidence. I guess that is why when I went for the appointment with the specialist herself I was expecting the same type of person. I was wrong.

The specialist began by asking me questions, and then refused to let me answer. Next she sat up perfectly straight and leaned forward, telling me how things were going to proceed, stopping only to ask if I had questions about she had just told me, but once again not actually answering my questions or addressing my concerns. I became frustrated and started to cry momentarily. Because I’m polite, or felt guilty, or maybe just because I’m Canadian or some other bizarre reason, I apologised for crying.

I could tell she had no clue why I had come to tears. From her response it was obvious she assumed I was upset about the diagnosis and the incidents that had occurred at the rural hospital. Of course, I was also not pleased about that, however what briefly turned my water works on in her office was her arrogant demeanor and total disregard for anything I said or attempted to say in between her “telling me” what had happened, and how it would be going forward.

After only a matter of minutes in the exam room with her, I realized trying to say anything to her whatsoever was an exercise in futility. She had an agenda and she was going to just run it right over me, back it up and do it all over again. So, I decided to stop speaking to her. She looked pleased.

I’m sure she assumed I was now listening to her every word implicitly and that my silence indicted utmost agreement. What actually was happening was I was engaging in a fantasy. I was imagining grabbing her by her hair, throwing her out of her chair, slamming her head repeatedly onto the linoleum floor, saying “Shut up, and listen to me for five seconds, bitch!”

Okay, there goes any image anyone ever had of me being sweet, innocent, or polite. I don’t think in that moment I have ever been so frustrated in my entire life. As I then glanced down at the floor while she spoke, I examined her fabulous four inch stiletto heeled black pumps and envisioned her in the Three Billy Goats Gruff fairy tale story – a white-coated, black spike heeled / hoofed goat. Clip-clop. Clip- Clop across a foot bridge, intimidating everyone in her path, even the trolls.

Mr. Wanton was present at the appointment, but he was silent throughout. Soon enough she dismissed us. Stopping once we were a distance away down the hall, I turned to Mr. Wanton, asking what he thought of the appointment. He just shook his head. Asking why he had not said anything, he replied, “There was no point.” I was in agreement. I then told him what I had been fantasizing when I gave up trying to have a discussion with her. Mr. Wanton’s eyes widened. We’ve been married for quite some time, he has never heard me speak of anyone in that way. On the drive home I said, “I never want to see her again.”

Today as I read the letter I re-lived that appointment. My first reaction was that I was not going to see her again. Mr. Wanton reminded me I didn’t have to, I could get another doctor. But it is not that simple when the city you go to for specialized care is small. There are a limited number of specialists, especially those who specialize in a particular group of patients. Today for the first time, I had the thought perhaps something had happened in her life before we arrived at the appointment that day which was difficult for her. I have the urge to humanize her. I want to believe she just had a bad day, and took it out on me. I told Mr. Wanton I will give her one more chance. This time, I won’t be blindsided.

I wish I could say this is the only time I have been disappointed by a physician, but it is not. It is heart-breaking to me that patients are all too often treated with so little respect. Being a physician is without a doubt stressful and difficult, but so too is being a patient. I’d like to believe we could meet each other halfway, with compassion and empathy. I’m not so sure.

Recently I began reading a new book by Danielle Ofri, M.D. called “What Patients Say, What Doctors Hear.” Dr. Ofri cites a research study showing, on average, doctors first interrupt patients within 12 seconds of the patient speaking. Equally disturbing, yet another study showed results indicating physicians “re-directed” the conversation from the patients primary concern in less than half a minute (again on average) into the visit. The fact a physician is bringing the topic of doctor-patient communication to the forefront is an encouraging sign. I can only hope better days are ahead, and I will never have doctor abuse fantasies again.

A mouth guard, Mr. Wanton, a pretzel & Me

Last week, I did actually have a dry mouth incident that left both Mr. Wanton and I in hysterical laughter. (If you are my mother, you should stop reading right here.) I had been to the dentist and on Friday afternoon (several hours after dental office had closed for the weekend) I put my night mouth guard on just because I was thinking about wearing it again (I hadn’t for quite awhile).

(No, Mr. Wanton did not say that to me. It would have been nice if he had though.)

Anyway, I popped it on my upper teeth. It was a bit snug but still comfortable enough. Then, I went to remove it but it wouldn’t budge. I recalled it always being a bit difficult, so I didn’t panic. Working at the edge again with my finger, I realized how dry my mouth was. I kept pulling at it, trying different locations along my upper gum line and teeth. My mouth and teeth were dry, so I started to panic a little thinking there was no lubrication between the teeth and the guard to help slide it off.

After trying to pry it off for over half an hour, I went to Mr. Wanton in the other room, and said through near tears: “I know this is ridiculous. F*** my life. What bloody next? I got my mouth guard stuck on my teeth and I cannot get it off, it’s Friday and I am going to be stuck like this until Monday when the dental office opens!”

He started to laugh, hard. I was furious at him for laughing at me, but I also realized the ridiculousness of my predicament and I started to laugh uncontrollably as well. Every time I started to say something, we’d both start laughing again. When we finally recovered, he said: “I can drive you to Dr. S’s house to get it off.” Our dentist is a “neighbour” about five miles down the country road. I said “No, I’m sure he doesn’t have dental tools at home.”

Then I saw a light bulb go on over Mr. Wanton’s head. He pulled a kitchen drawer open and took out a butter knife. Holding the knife in the air, he stepped toward me saying: “Here, I’ll do it”. Once again I burst into uncontrollable nervous laughter, but through it I managed to say: “No way, you might break my teeth! I’ll stay like this until Monday.”

(Even though I admit by then the mouth guard was feeling too tight, hurting my gums a bit, and I’m not sure if it was the stress, maniacal laughter, or the mouth guard, but I could feel a headache coming on. I knew there was no way I could possibly keep it on until Monday.)

So, Mr. Wanton said, “Fine then” and wandered off shaking his head. I went into our bedroom, sat on the bed and pried at that thing until finally I felt a glimmer of hope as over a gold crown covered tooth it finally budged enough for me to get a bit of leverage on it. Then with one desperate yank, it came off completely. Perhaps it was smoother there, or not quite as close a fit in that spot. Whew. I threw the mouth guard in the garbage.

The very next day, I took a bite of a pretzel chip, a new product I bought to try, biting it in two. The piece I bit off went to the roof of my mouth and got stuck on my palette, literally lodged there instantly. Like the previous day, I walked over to Mr. Wanton and said: “Would you believe I just got half a pretzel chip stuck on the roof of my mouth?” He started laughing, again. No matter how hard I pushed on it with my tongue it wouldn’t move. I tried water, nothing happened. He said: “Just pull it off!” I said: “Can’t you see I’m trying!” Finally after several attempts I managed to stick my finger on it, getting under an edge and dislodging it. I am now sworn off pretzels and mouth guards…for life.

(I do realize the meme says “pretzel’s” and it SHOULD be “pretzels”….either way you spell it, right or wrong, the pretzels did make me grumpy…..AND anxious.)

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

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.

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/

Oh no, here we go again!

It is now May 1st. Sjogren’s Awareness Month is over with for another year. I’m so relieved that I don’t have to think about it anymore!

Yes, of course I am being sarcastic. Anyone who suffers with a chronic illness is well “aware” of the effects of the illness every month, week, day, and sometimes minute of the year. It is not just Sjogren’s patients who have to live with on-going symptoms, but many people who have autoimmune and other illnesses.

Type 1 diabetics cannot just “let it go” and not think about their bodies, symptoms, medications, and self-care. If a Type 1 Diabetic doesn’t monitor their blood sugar level the consequences can indeed be dire. It is essential they are vigilant in monitoring themselves several times a day.

May is Celiac Awareness Month, likewise for another autoimmune disease, Lupus, which is sometimes called a “sister disease” to Sjogren’s because they share so many similarities. In fact, this month in Canada, we recognize 38 different health conditions. Some have an awareness day, some a week, others devote the entire month to public education and awareness.

BrainCancer.org-Go-Gray-in-May

Gluten awareness

Mental Health Month

World Lupus Day

Celiac patients must be vigilant in ensuring they do not consume gluten. For them, eating gluten-free is not a fad or choice, but a medically essential task. Most people eat three meals a day, possibly some snacks. Imagine having to be concerned at every single meal if there might be gluten ingredients in your food, which could trigger horrible gastrointestinal symptoms as well as other systemic symptoms if accidently ingested.

I understand “awareness” months are really not for the people afflicted with any of these illnesses. Likewise caregivers of children, or adults who have chronic and / or terminal illnesses, including mental health issues, or lifelong conditions such as cerebral palsy or autism hardly need any reminder whatsoever of what is involved with having such a diagnosis, its effects on the individual as well as the people who care for them.

So though you may get “sick” of hearing about these various illnesses as we go through the year and they each take turns being condition of the month, remember that no one is more “sick and tired” of them than the person who has the condition. Remember a little understanding on your part can go a long way, someone you love will love you for it!

Bite-Size Memoir Prompt: Childhood Illness

On my toes, a clumsy pyjama clad ballerina, neck stretched back, head tilted with mouth wide open trying to catch my balance and the bright light over the bathroom vanity long enough to see the back of my throat. Scratchy and raw for days I had an urgent need to see what was happening back there.

Finally a glimpse; crimson with tiny thickened white splotches scattered about my throat. I was eleven years old; old enough to know it was not good.

“Dad, look in the back of my throat. I think I have an infection.” I blurt out the diagnosis as I throw my head back to open wide in front of my Dad as he makes his breakfast.

“That’s just bread crumbs.”

“No it’s not. It’s infection.”

I convince my Mom to take me to the doctor, get antibiotics for strep throat, and begin my lifelong health vigilance.

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To learn more about “Bite-Size Memoir” (memoir of no more, no less than 150 words based on a weekly prompt) please visit Lisa Reiter’s blog “Sharing the Story”:

http://sharingthestoryblog.wordpress.com/2014/06/13/bite-size-memoir-no-7-childhood-illness/