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.

fullsizerender-8

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/

Put On Purple today!

So, I was going to leave illnesses behind to blog about something completely unrelated to my medical adventures, but then I realized today is Lupus Awareness “Put On Purple” Day, so decided to post my POP selfie.

IMG_1512

Before I was diagnosed with Sjogren’s Syndrome, when I was trying everything I could think of (other than medication) to alleviate the myriad of muscle and joint aches I was suffering from, a physiotherapist suggested I ask my doctor to be checked for Lupus. I had asked before. I asked again. My doctor refused, saying I did not have Lupus or any other AI connective tissue disease. So I found a doctor who was willing to test for it.

I did test positive for the ANA blood test but not the anti-dsDNA antibodies for Lupus. A tiny percentage of people who do not have Lupus can test positive for ANA but most people who test positive do have Lupus. Symptoms have to be considered alongside blood work.

If you’d like to know more about the specific blood tests here is a reputable link: http://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/

As I mentioned in earlier posts I did also test positive for the SS-A and SS-B antibodies specific for Sjogren’s. SS-A are related to sun sensitivity, so though I have had the definitive Lupus “malar rash” on my face in the past, some doctors felt it was due to the SS-A antibodies in combination with too much sun exposure, not due to Lupus.

It only takes mere minutes, even fifteen in direct summer sun for me to end up with a malar rash accompanied soon after by extreme fatigue. Some people think sun exposure for people with Lupus or SS-A antibodies of Sjogren’s is no big deal. They are wrong. Even minimal sun exposure can result in a systemic response, possibly even triggering an autoimmune attack on an individual’s organs such as kidneys, the brain, or lungs.

IMG_0292

The jury still seems to be out, no agreement between doctors thus far on my Lupus diagnosis. Although I do have other symptoms of Lupus, one doctor said I don’t have “full-blown” Lupus with “organ involvement”. and because I additionally have had skin manifestations of yet another autoimmune connective tissue disease – dermatomyositis – which affects the skin and underlying muscle tissue they are calling what I have “Undifferentiated Connective Tissue Disease”.

There is an accepted criteria for diagnosis of Lupus and a person must exhibit 4 of the 11 characteristics over time to be diagnosed, I have six. To learn more about the diagnostic criteria and symptoms visit your local Lupus organization website or click here:

http://www.lupus.org/answers/entry/lupus-diagnostic-criteria

The Undifferentiated Connective Tissue Disease diagnosis is on top of Sjogren’s and Autoimmune Hepatitis. With my body, the fun just never seems to end! Most of the people I know personally who have Sjogren’s also seem to be collecting other autoimmune conditions as time goes on.

We’d all prefer to collect something else. However it seems getting one AI connective tissue disease such as Lupus, is like getting one domino, soon you collect more to stack alongside, then from time to time, one gets pushed over toppling the others spinning you into a “flare” of one or more of your conditions, then possibly adding yet another.

Part of why Lupus and related conditions are so difficult to diagnose is every patient can present a different constellation of symptoms, and blood tests do not always give definitive answers. Awareness will help create quicker diagnosis times, expedite necessary treatment protocols, and hopefully lengthen life span while enabling higher quality of life as well.

Help spread the word and “Put On Purple”!

First 15 Minutes in Day Surgery

(What follows below is the first draft of a  writing assignment I completed for writing group. The exercise was to show “setting” of our choice, fact or fiction. )

Celeste leaned back on the narrow bed that was covered by a thin white cotton sheet smelling slightly of chlorine bleach stretched over the thick rubbery plastic mattress pad. Feeling the soft rubbery surface underneath her reminded her of sleeping on an air mattress that was only half inflated. Some might be bothered by the faint bleach odor but to her it brought back memories of the neighbourhood swimming pool. Good memories. The flat as a pancake pillow underneath her head was also plastic, covered by a well bleached, highly sanitized, vellum thin pillowcase. Though the bed was bound to be hot and uncomfortable for someone with a fever, it was fine for someone chilled with fear, someone like Celeste.

She wiggled and adjusted her body to get more comfortable, finding just the right position to support her aching spine and hips. Breathing a lengthy drawn out sigh, she felt her body momentarily relax in spite of her racing mind. She tugged on the slightly rough but thick blanket on the end of the bed, pulling it up over her entire body. She had the thought: “what if this was a magic blanket, that pulling it up over your body could make you disappear Chris Angel style?” If only.

Having been temporarily left alone with her thoughts, she stared up at the stark white ceiling. Her eyes then slowly drifted downwards to the barren white walls decorated only with medical paraphernalia such as oxygen outlets, suction vessels, and call button cords. Her eyes went down to the recently polished white linoleum tile floor, then up to the printed plaid wedgewood blue with tangerine orange curtain separating the beds. Thankfully someone at some point had made the decision to provide a touch of color and cheeriness to the otherwise plain bleak room. She hoped they at least got a high five for that decision.

Resting her right arm alongside her body, she kept it still and straight so as not to disturb the IV that had been inserted. She had not been prepared for the chemical medicinal smell that invaded her nostrils, so strong that she tasted it on her tongue for a few seconds before it dispersed into the air as the nurse swabbed her arm then plunged the tiny needle into her blue-green vein.

All was quiet at the moment except for country music being played softly. She recognized Johnny Reid crooning a ballad. Possibly it was slowing her pulse. Yes, it seemed it was. Research said music could do that; she believed it to be true. Johnny Reid was probably a wise choice. His mellow voice probably would not be overly offensive to any of the people in the room, no head bangers or gang bangers here today.

As Celeste had entered the day surgery ward with the chubby, slightly limping, pleasant demeanor but all business nurse leading the way to her bed, she had checked out the other patients, none of which had their bedside curtains completely drawn. One older middle aged Native woman with glasses on, eyes closed, possibly sleeping or perhaps just pretending. One older middle aged Caucasian woman with long brown hair pulled back in a ponytail reading an Oprah Pick book. Celeste could recognize the large white sticker signifying it being an Oprah book from across the room. One older man beginning to rouse, momentarily trying to talk to the woman on the chair beside him, sounding like a soft-spoken Darth Vader, since he had an oxygen mask covering his mouth and nose. One very elderly lady, with two middle aged men standing at her bedside wearing ball caps, blue jeans, one a white t-shirt, the other a denim work shirt, quietly discussing a concrete pouring project, while the woman lay completely still, eyes staring straight ahead.

Just as the nurse showed Celeste the bed that was to be hers for the day, next to the sliver of an oak paneled closet that would store her clothes while she was wearing her baby blue, always revealing, opening in the back hospital gown, another nurse wheeled in a patient on a gurney. She delivered the older woman to the bed directly across from Celeste’s, and announced “V___25 P___ 150” to the only other nurse in the room, the one preparing to take Celeste’s medical history once she was changed.

Celeste remembered those were the drugs she had the last time she had been here for tests. She also remembered those were some of the drugs MJ had in his bloodstream at the time of his death. They were extremely fast acting, caused amnesia too. When you woke up you felt like you had been out for only two seconds, and nothing had happened at all. It was the only thing about today she was looking forward to – the chance to think and feel nothing at all for half an hour. She realized at that moment how someone became addicted to drugs. How she could become addicted to something that made her think and feel nothing at all.

 

It’s REAL! My first exhibit / publication!

013002Ventured to Edmonton with one of my sons on Thursday evening to attend the opening reception of the InSight 2 – Engaging the Health Humanities International Exhibition. So exciting to see my paintings and poems displayed alongside so many other intriguing exhibits by talented artists and health professionals.

When we first arrived, we wandered though the UofA (Fine Arts Building) FAB Gallery viewing all the work, but admittedly my eye was on the look out for my exhibit. I was a little panicked when I thought we’d been through it all and I could not find my paintings / poems, then I remembered we had not been to the very first area near the entrance…..sure enough they they were! Whew. For a minute or two I did think it really all had been just a dream!

I was also thrilled to read some of the same thoughts I had expressed in my initial submission, and 150 word “abstract” about my exhibit, being expressed in the keynote speaker, Dr. Alan Bleakley’s introduction in the publication that is also part of this exhibition / symposium. As an advocate of the health humanities / arts and medicine working hand-in-hand, he readily acknowledges that there can be “well-being without being well.”

I was so grateful to be able to attend the reception to see my “Blue-Green Elixir” up on the FAB 011012Gallery wall, being visited by fellow artists, writers, doctors, health professionals, students, and the public at large. Thank you so much to Graeme for ensuring I made it to the reception, and Shannon who was very much with me in spirit every step of the way! Love you both for knowing how important this was to me, without me having to tell you!