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.

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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.

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.

Life Divided in Two

“A diagnosis of catastrophic illness changes everything. It’s a thick line drawn through your life, separating the before and the after.”
-Heather Summerhayes Cariou (Author – “Sixty-five Roses”)

April 1st heralded the beginning of Sjogren’s Awareness Month. It was my intention to blog a bit about Sjogren’s Syndrome, and specifically my own experiences, each day of April. That did not happen. Here we are on the final day of the month, and I blogged only a few times. I could beat myself up about not reaching the goal I set, but I get beat up enough by other things out of my control including my own body and the symptoms of Sjogren’s.

Though not writing daily, I’m glad I decided to commit to writing about Sjogren’s again because there were several people who contacted me privately, or commented publicly that they had never heard of Sjogren’s before reading one of my posts. I had mentioned to Mr. Wanton, if even one person learned of Sjogren’s as a result of my blog, it would be worth it.

Thank you to everyone who has read, commented, and shared my blog. I appreciate your assistance in spreading awareness, please continue to do so. Sjogren’s currently has no standardized treatment protocol and no cure, perhaps through continued awareness and increased research funding, over time that may change.

In the past I have been reluctant to write about my journey of diagnosis, and navigating the symptoms of Sjogren’s because I felt some people might see me as doing it “for attention” or to garner sympathy. This week I ran across another blogger’s post about how in our society we condone (or at least tolerate) so many types of attention seeking behaviour (one only need think for a moment about reality TV, the shenanigans of political leaders, or the proliferation of  highly inappropriate or risque “selfies” on-line) yet when someone with a mental health issue or other chronic illness writes authentically about their experiences it is often frowned upon, deemed “attention seeking”, or having a “pity party”. That is unfortunate in my opinion; we have much to learn from each other’s honest health “stories”, both from a medical perspective as well as a human / empathic one.

I will be continuing to write about Sjogren’s, but I will also return to writing about other topics as well. As I’ve mentioned previously, I started this blog to write “wantonly” – about whatever grabbed me in the moment. When you have an illness that causes so much havoc with your body, it is hard to ignore. My life is not all Sjogren’s, but Sjogren’s does affect every aspect of my life.

To close out Sjogren’s Awareness Month, I was thinking about what I would want people to know most of all. The first thing is the seriousness of Sjogren’s; it is a progressive systemic disease equal in effect on quality of life to MS. It is definitely life-altering, but can also become life-threatening when organ involvement or lymphoma develops.

Secondly, it requires specific treatment and management individualized to each patient, yet it is a relatively unknown disease among medical professionals including Rheumatologists. In fact, one physician with Sjogren’s herself who does medical school in-service sessions discovered in her area of the USA only one medical school even had Sjogren’s in the curriculum. I have heard other doctors mention they heard the name in med school but had only two minutes of lecture on it. I suspect they were told it was only dry eye and dry mouth, as that continues to be the prevailing belief.

I want people to understand how scary it is to have an illness doctors are so unfamiliar with and to be unable to follow a standard, proven treatment protocol. I want it to be known that even though we may not have cancer, many of us are on a chemotherapy drug or a “biologic” drug, possibly for the rest of our lives. There is no such thing as remission.

On a personal level, I want people to know when I have to miss out on an event it is not always by choice. Each time I miss out on a once in a life-time event important to a family member especially my children, or a close friend, it breaks my heart a little bit more, even if at the time I say “it’s okay”. That if I seem rude when I have to interrupt you and leave immediately when we are standing to chat on the street or in a store, it is because I can’t stand up any longer. When you see me clothed head to toe under an umbrella on a clear summer day it is because being exposed to the sun is risking a disease “flare” that can cause further organ damage. If you knew me before Sjogren’s you might miss the person I used to be; you need to know I miss her too. Sjogren’s drew a thick line through my life, there’s no crossing back.

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

Queen of Cliche’s Friday the 13th

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I have a confession to make – Mr. Wanton affectionately calls me the “Queen of Clichés”. Being a blogger, a writer, a sometimes poet, this is not a title I should be proud of in any way.

He crowned me the Queen after decades of daily use of such phrases as: I look like the wreck of the Hesperus and don’t put all your eggs in one basket. Admittedly, I do overuse clichés. I know it, I own it. When I write for public consumption I consciously attempt to avoid them. However, after the day I had yesterday I realize sometimes what happens in a day warrants the use of clichés; sometimes a brain just needs to rely on old stand-bys to get the job done.

Depending on your level of belief in superstition and how your day went yesterday you may understand what I am talking about. Yesterday was Friday the 13th, a supposed bad luck day. Since my eldest son was born on the 13th day, I personally consider it a lucky number, a lucky day.

As a child I avoided stepping on sidewalk cracks so my mother wouldn’t break her back, but I have never been one to avoid walking under ladders or feared black cats crossing my path. Moral of that story: I feared my mother much more than black cats or ladders.

So knowing full well the date, I went about my day yesterday filled with optimism and a sense of good fortune. Perhaps I was a little too smug in my outlook from the outset, you know what they say – Karma is a bitch. See? Sometimes clichés are really the best for what you want to say. Cut to the chase, everyone knows exactly what I am talking about.

So, my day away from home officially started with a haircut with a stylist who delivers a beyond relaxing shampoo and sensual scalp massage. Once confessing I nearly moaned out loud in the chair while she was running her fabulous nails along my scalp, she said I would not have been the first. (Notice how ever since I said this blog was not sexual in nature sexual innuendo has been popping up? It’s like that old childhood game when someone would say: “I will say a word and do not think of the word I say.” They say “blue”, and hence it is all you could think about.)

After my hair appointment, I ran a few errands in record time in the suddenly increasingly warm winter weather. I mailed a small parcel that fit into the letter size slot and was low enough in weight to be mailed as a letter instead of parcel saving me about ten dollars. The postal clerk said “It’s your lucky day!” It did indeed feel like it was, so next I went and bought a lottery ticket. Then I met a friend for tea downtown, later running into my son’s girlfriend and a book club friend to have a visit with as well. The sun was shining; I was on a roll having the most relaxing day.

Then I went home. That’s when the you know what hit the fan, the wheels fell off the bus, and the day from Hell began. I knew I shouldn’t have counted my chickens before they hatched. It was all too good to be true, the cliché is correct: all good things must come to an end.

And, do you think I won the lottery? Not a snowball’s chance in Hell.

My Joy Jar*

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A few years ago on Pinterest the “good things jar” was pinned which basically is: re-purposing an old jar or container of some sort, every week writing down something good that happened to you and putting the slip of paper in the container, then on New Year’s Eve reading the contents to reflect on all the good things that happened to you during the year. Yah, whatever, bah humbug.

Even though I came across this idea on Facebook multiple times, I never considered making one until this year. What spurred me into action was a friend whose 2016 contained significant losses of people she loved dearly, enduring on-going health challenges, difficulties at her job, and also banishing a family member out of her life; however not all was bad, she did go on her lifelong dream trip overseas. At the end of the year she posted about how having the notes in the jar to read did help her realize indeed numerous “good things” had happened in spite of the grief, frustrations and losses she sustained.

What the hell, I’ve nothing to lose and only warm fuzzies to gain was my thought this New Year’s Eve. Perhaps because this past Dec. 31st was one of the better ones in recent memory, I was motivated, I had something positive to put on a paper to start off the year. I would commence documenting every day small joys.

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When I decided to go forward with this project, I blew the dust off an empty container in the pantry, placed it on my desk, writing and tossing my first note inside. Skepticism engulfed me. I wondered if some weeks the best I’d be able to muster would be “did not drop toothbrush on the floor” or “didn’t get dog drool on my pants”. No, I reminded myself, this was not about bad things that didn’t happen hence being good by default, but honest to God “good things” that would actually occur.

Some people write a daily note, some write a weekly note. I figured I was optimistic and realistic with a once a week goal. Yet here I sit, just seven days into the year and I have seven notes in the jar. I now see how this can work from beginning to end of the year. Just by having the jar on my desk in clear sight it is reminding me to acknowledge the good that happens every day. I’ll let you know in 358 days how it has all worked out.

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*Earlier this week I blogged about the meaning of the word “wanton” assuring readers of no sexual content on this blog. Yet, while sitting at my desk writing down a “good thing”, I hollered to my husband (“Mr. Wanton”) downstairs in his office: “Hey, you wanna help fill “My Joy Jar”? Silence. I hadn’t explained the project; he had no idea what I was talking about. A few seconds later he hollered back: “Sure. I’ll meet you in the bedroom.” Someone thinks he might be in for a really good year. 😉

Wanting to be Wanton

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I began this blog by naming it based on my intentions of what I would be posting. The word “wanton” (not to be confused with “wonton” of the Chinese soup and deep fried variety) has three different meanings.

The first is maliciousness or viciousness that is unprovoked, or with cruel intention. No, that is not what I had in mind. Definitely not going to virtually bitch slap anyone here (at least not intentionally). The second meaning involves sexual promiscuity and unchaste loose women, you know, like the ones who cavorted with pirates when their ships landed ashore. So if someone came upon the blog looking for porn or pirate tales, they too would be out of luck. Lastly, wanton also means to play or frolic.

It was my intention for this to be a place where I could frolic with words playfully and flirtatiously. I intended to be here at least several times a week, not just a handful of times per year. I didn’t want each post to take hours to write; rather it would be a place to spontaneously spurt out what might be on my mind at any given moment. Like a kitten walking along a sidewalk that spots a leaf and decides to pounce on it, throws itself on its back, tosses the leaf in the air, then struts off down the sidewalk again with nary a furtive glance back. Yes, that is what I desired to do here, with words.

As I opened the calendar today to the first day of the first month of a new year, I had a surging feeling of renewal. I began to reflect on what my goals were for the coming year. I became possessed by a sense of urgency to return to writing here; writing the way I initially intended to. So here I am with no idea of what might be to come in the days ahead, but ready to write come what may.

Happy New Year! Love and light to all – may you too be blessed with an urge to write, renew, revisit, frolic or pounce.

xoxo

Sick of hearing about Sjogren’s?

Are you sick of hearing about Sjogren’s Syndrome?

The topic came up this week on Christine Molloy’s Facebook page “Thoughts and Ramblings on Life, Love and Health”. Christine has a blog: http://www.christinemolloy.com She celebrated her 6th anniversary of beginning the blog by posting the link to her very first blog post again this week. Over the years she has posted about Sjogren’s but her blog is not exclusively about the syndrome. At the outset she made a conscious decision for it not to be. She stated she was more than Sjogren’s, so she intended her blog to be more than just that too.

Likewise I made a similar decision about my blog when I began. That is why I have a topic bar underneath my blog title, so people can chose to read just the Sjogren’s posts or random topics, just memoir or poems, or whichever combo thereof.

It is a common concern of most Sjogren’s patients (as I am sure is the same with sufferers of any other chronic illness) to not to talk about their illness all of the time. We are quite aware other people will get sick of hearing about it, because guess what? So do we.

Unfortunately it is not an easy ailment for patients to ignore since symptoms frequently affect a person from head to toe, literally.  It is chronic and without cure. There is no treatment specific to Sjogren’s; what treatments are available are often hit and miss.Relentlessly day after day, Sjogren’s is exhausting.

Even the minority of Sjogren’s patients who are not affected initially by overwhelming fatigue become tired because of the illness being so invasive of time, energy and finances. Fatigue is not just a physical symptom of the disease itself and the chronic flu-like pain so many suffer with, but also becomes a side effect of what it takes to manage the disease. A few years ago a chronic disease lifestyle study was done which showed that Sjogren’s was on par with Multiple Sclerosis as far as the patients’ day to day quality of life.

While admittedly we get tired of not just hearing about Sjogren’s but also living with it, many of us do feel it is critical to raise awareness of the disease, as well as reach out to support others, especially those who may be new to the diagnosis, or perhaps still seeking one. So for that reason I will continue to post about Sjogren’s from time to time, not just during awareness month but whenever the mood strikes me.

Am I doing it for attention, pity, sympathy, or to play the “my disease / symptoms are worse than yours” game? Absolutely not.

I do it to educate, so perhaps others who may be struggling with symptoms may have a shorter road to diagnosis and treatment than I had. I also do it in hope of creating better understanding not just of the medical aspects of Sjogren’s, but for the challenges that come along with living with the myriad of symptoms. I do it not just for the Sjogren’s patients but also for their loved ones, so that they too may have a better understanding of the syndrome, thus in turn the potential for greater patience and compassion. I do it because telling my story makes me feel better, and maybe just maybe, my story might do the same for you.

vanzant quote re story sharing

http://www.sjogrens.org
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