Education

Oh no, here we go again!

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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!

Sick of hearing about Sjogren’s?

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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
http://www.sjogrenscanada.org

Bite-size Memoir Yum, yum!

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A fellow blogger, Lisa Reiter, started a project called “Bite-sized Memoir”. The challenge is to write a 150 word piece of memoir on the topic she provides each week. Thought I’d give it a go. If you’d like to learn more, or participate (even if you are not a blogger you may do the challenge and post in the comments section of her blog on the page for each week’s particular topic). Here is the link for more information / guidelines:

http://sharingthestoryblog.wordpress.com/2014/05/02/bite-size-memoir-no-1-school-at-seven/comment-page-2/#comment-239

This week’s topic was “School at Seven”. I missed her deadline for compilation but decided to do it anyway to warm-up for next week’s topic which she will publish tomorrow.

I am curious to see if I will find this writing just as delicious as those bite-size muffins I was woofing down from the market all summer!

 

School at Seven

I entered the grade two class of Miss Dari at St. Paul Elementary School in 1968. Her classroom was on the east side of the “old grey school”, the single story wing attached to a brand new two story wing for the older kids. The “older kids” were grade four and five. My Mom was up there too, teaching grade five.
I have few memories of particular activities and lessons in the classroom. However, strangely enough, I have a very vivid recollection of the very first word list lesson in the little hardcover Macmillan spelling text book. The first words we had to know how to spell that year were: the, is, not, cat, cow, car. And they were in that exact order. I would challenge any psychotherapist or neuro-psychologist to explain to me why that spelling list remains embedded in my memory to this very day.

No delusions of grandeur!

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

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

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

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

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

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

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

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

 "Blue-Green Elixir"

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