memoir

If you can swish or spit, celebrate!

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We take so many things for granted until we don’t have them in sufficient quantities or quality. For Sjogren’s patients that would include saliva. (And tears of course, but that’s a story for another day.)

Sometimes Sjogren’s patients still have some saliva but I have been told and have read it is of a different quality than normal. Other Sjogren’s patients have quite a large quantity remaining, so find this to be one of their lesser symptoms.

I wouldn’t say the problem of dry mouth varies too much overall in my case. It’s always bad. Though of course there are things that make it slightly better or worse such as types of foods consumed, some teas, certain toothpastes and mouthwashes (especially those containing alcohol).

There is help for dry mouth, both oral medications (a couple different types – Salagen or Evoxac), as well as over the counter products. I have never tried the oral prescription meds because they have never been recommended to me, and also they can have many side effects (lung issues, profuse sweating, etc.) Some people do not tolerate them well. I often have issues with medications so have steered clear of them so far, but would consider if I started choking frequently or developed increasingly serious oral health issues.

I have used over the counter saliva “substitutes” which I do not find pleasant. I once told a doctor it was like having someone else’s lemon flavoured spit in my mouth. It was not like saliva at all but it was a temporary solution, a bit of a fix. There are also numerous other dry mouth products such as discs and lozenges, as well as toothpastes and mouthwashes specifically formulated to help patients cope with the dry mouth symptoms. Sjogren’s patients need to be diligent about oral hygiene and have regular dental cleanings and check-ups. I love my Sonicare electric toothbrush and highly recommend it or another quality electric toothbrush for part of an excellent oral hygiene regimen.

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Oral problems that can occur due to dry mouth include overall oral discomfort (just having a very dry mouth does not feel good), tooth decay, fungal infections, difficulty swallowing dry foods (or even other foods such as lettuce, raw carrots, etc.), difficulty speaking due to tongue and lips sticking, gum disease, bad breath, teeth adhering to cheeks while sleeping, and salivary gland enlargement.

It is important to remember saliva in your mouth is the beginning of the digestive process, vital and not to be taken for granted. If you have lots, celebrate it – swish it around and remind yourself of all the good things it does for you!

NOTE: I appreciate the interest in my Sjogren’s awareness posts and the questions that have come forth over the last couple weeks. Just a reminder, these blog posts are my own experiences and not intended to be a replacement for advice from your own physician or medical specialist. It is also important to remember that symptoms and resulting treatments can vary greatly from patient to patient; that is another reason Sjogren’s Syndrome is so difficult to diagnosis and to treat.

A diagnosis that is hard to swallow…

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“If I gave you a cracker right now, could you chew and swallow it without water?”

Struck by the oddness of the question the Rheumatologist asked, I nevertheless thought about it only a fraction of a second and answered a sure “no”.

Why would he, a Rheumatologist, be asking such a question when I had been sent to him because of my ongoing complaints of sore joints, aching muscles, relentless fatigue and some vague irregularities in common blood test results?

I had seen this specialist once before. He had conducted a brief physical exam at the time, with special attention to my joints and muscles. He assured me I was completely healthy and he had no concerns. However, he sent me off to the lab that day after my appointment because he wanted a few specialized blood tests done. About ten days later he called asking me to come in to see him again for a more thorough examination, as there were some “indicators” in my lab work but he did not elaborate on what they might be.

This visit he started by looking in my mouth. I simply thought he was going to do a complete exam head to toe. After asking me about my ability to swallow a cracker he told me that my mouth was extremely dry, with barely any saliva in it all. I had never thought about it, but as he told me this, I knew he was correct.

This week someone asked me if dry mouth was the first symptom of Sjogren’s I experienced. I replied initially I thought it was not but rather it was the unrelenting fatigue alongside muscle and joint soreness that brought me to the doctor over and over again starting in my thirties. Looking back however, I suspect I may have had Sjogren’s as a teen or possibly as a child.

I remember being quite young and putting butter on my crackers when I ate them. As a teen my Mom looked at my toast and asked sarcastically, “You think you have enough butter on that?” I now realize I needed the fat on my crackers and toast so I could swallow them easily. My Mom had also wondered how I could wander around the house brushing my teeth and not be drooling frothy toothpaste all over. It is all clear now; my mouth was simply very dry for a very long time.

Further evidence of the dry mouth problem was that I had numerous cavities as a child / teen and was subjected to extensive dental work for fillings and crowns. As a young adult, my dentist said “You must have been a real grunge mouth when you were younger?” Thinking back, I realize as a youngster I was probably not as meticulous as I am now about my oral hygiene. I certainly know now how many foods adhere to my teeth; even something as simple as a single bite of a cracker or bread can cling to my teeth for hours since I have so little saliva.

Lack of saliva can increase risk of choking as well. At times I have had a miniscule piece of romaine lettuce or carrot get stuck on the lining of the back of my mouth or throat, strongly adhered, difficult to get back up or go down. Even with a drink sometimes it will cling, requiring me to eat a bite of something else in hope of it catching that fragment along with it to swallow.

The Rheumatologist had explained there were tests which could be done to confirm the Sjogren’s dry mouth diagnosis (lip biopsy, unstimulated salivary flow rate, etc.) but he said in my case they were absolutely unnecessary; a visual check combined with the blood tests, and other physical complaints was all he needed to be sure.

He explained I tested positive for ANA as well as the Sjogren’s specific antibodies SS-A, and SS-B in my blood therefore I indeed had Sjogren’s Syndrome. I had not an imaginary, psychosomatic illness, but a real one that had shown up in my blood explaining the symptoms I had been complaining about and reporting to doctors for years.

In that moment I was relieved, as well as excited to have a diagnosis at last. Little did I know then; in the coming years I would discover the diagnosis would be difficult to swallow in more ways than one.

*Note: Sjogren’s is not the only reason people experience dry mouth. Hundreds of medications (both prescription and over the counter drugs), cancer therapy, tobacco use, and nerve damage are a few of the other main causes of dry mouth. It should be noted that dry mouth is only one of many possible symptoms of Sjogren’s. For more info visit: http://www.sjogrens.org or http://www.sjogrenscanada.org

Sjogren’s Awareness: So, how did I get it?

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This week a friend asked me how people get Sjogren’s Syndrome. Where Sjogren’s comes from is a good question. My first thought in response to the question would be: from Hell! I suspect other Sjogren’s patients, especially those who suffer with systemic symptoms and organ involvement would agree.

Personally I have no idea how I got Sjogren’s; medical scientists are still searching for the definitive answer to that question themselves. My friend asked if it was genetic, bacterial or viral. As far as researchers have been able to discover so far it appears it may be a combination of those factors that cause the illness to manifest itself.

Current thinking is perhaps more than one gene may be involved, but scientists are not certain exactly which ones are linked to the disease, because different genes seem to play a role in varying patient populations. Simply having one of the suspect genes will not cause a person to develop the disease; it appears some sort of trigger must activate the immune system. Scientists think that the trigger may be a viral (something like Epstein-Barr perhaps) or a bacterial infection. Some medical researchers are investigating whether maybe the endocrine and nervous systems play a role in developing Sjogren’s as well.

This is how researchers think it may work: A person who has a Sjogren’s-associated gene gets a viral or bacterial infection. The virus or bacteria stimulates the immune system to act, but the suspect gene(s) alters the attack, sending the fighter cells (lymphocytes) to the moisture producing glands initially, usually eyes and mouth. Once there, the lymphocytes attack healthy cells, causing the inflammation which damages the glands and keeps them from working properly. But Sjogren’s autoimmune reaction doesn’t always stop at the eyes and mouth; it can affect all moisture producing glands in the body, as well as other parts of the body including connective tissues, and organs such as the lungs and liver.

Basically how I usually describe it to people is that my body’s immune system started fighting something (virus / bacteria) in my body which means it was doing the job it was supposed to do, BUT then something happened to make it start attacking the healthy tissue instead, causing the autoimmune disease to manifest.

Because medical scientists still have no sure knowledge of the cause, it is no surprise that there is not yet a cure. No specific targeted Sjogren’s treatments are currently available either; there is no “go to drug” specifically for Sjogren’s. The best help patients currently have available are drugs to alleviate symptoms, to attempt to arrest the inflammatory process, and the immune-response.

You might think Sjogren’s is rare, yet it is not. Estimates are 1 in 70 people in USA / Canada have Sjogren’s. What is rare is getting a diagnosis because its symptoms vary from person to person, are often initially subtle and possibly even intermittent. It is estimated that most people wait an average of 5-7 years to get a diagnosis, but many more wait ten or more years and see multiple doctors in the process as they search for an explanation for the myriad of diverse symptoms Sjogren’s can cause, including excessive dryness of eyes, mouth, skin, digestive tract, etc., life-changing fatigue, chronic muscle and joint pain, organ involvement, neuropathies, and even increased lymphomas.

For more information on Sjogren’s I recommend:

“The Sjogren’s Book” (4th edition) edited by Daniel J. Wallace for detailed medical information on all manifestations of Sjogren’s and the science of autoimmunity in relation to it. It reads like a medical textbook, so best for those with medical knowledge or patients who have significant background regarding Sjogren’s.

If you prefer a less scientific read, I suggest “the New Sjogren’s Syndrome Handbook” (revised and expanded 3rd edition) by David J. Wallace which is exceptionally patient friendly.

For first-hand patient stories of getting diagnosed and living with Sjogren’s, Christine Molloy’s “Tales from the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjogren’s Syndrome” is the best I have read.

All of the above are available via Amazon if you are unable to locate elsewhere, including your public library via inter-library loan.

http://www.sjogrens.org
http://www.sjogrenscanada.org

Tales From The Dry Side photo

No better day to return!

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Upon waking this morning I grabbed the book on the top of the stack beside me, Patti Smith’s “M Train’. It had recently been recommended by
Eunice, a writer, mentor to many who have had attended one of her writing workshops, and the woman whose voice I always hear when I write.
Knowing I would have to be up early tomorrow, I allowed myself the luxury of remaining horizontal between the flannelette sheets to read for two
consecutive hours finishing the book.

I then picked up my phone to check my e-mails and Facebook. I was reminded today was International Women’s Day,
which reminded me in turn that today is Eunice’s birthday. How fitting, a woman who encourages women to tell their stories, celebrating her own birth
on the same day we celebrate women all over the world. In the post today I received a boxed collection of Alice Munro’s work I ordered awhile back.
Eunice’s workshop title is a play on words of Nobel-prize winning short story author Alice Munro’s novel “Lives of Girls and Women”.

Serendipity? Synchronicity? Fate? Power of intention? Female energy?

I’ve neglected my blog for over a year. I have procrastinated for weeks, contemplating my return. The universe was telling me today was the day.

Thank you Patti Smith. Thank you Eunice. Thank you Alice Munro. Thank you girls and women everywhere. I heard you all.

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Disco!

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Mirror ball throwing shimmering pieces of light all over the old brick walls. Music echoing, bouncing against the brick, concrete floors and ceiling pipes. Strobe lights flashing bright streaks into the centre of the dance floor. Groups of sweet-sixteen girls, in white jeans and sleeveless t-shirts, dancing, doing the hustle to “Car Wash”. Boys with mullets or “fros”, and platform shoes watching from tiny tables scattered along the perimeter, between slipping outside to have a smoke and a boot-legged beer. This was as exotic an atmosphere as one could hope for in our small rural town on a frigid January night. Some teenage guy had an extensive record collection, a decent stereo system, a few Radio Shack gizmos, and enough cash to rent out the basement of the “Old Brick School” to fulfill his vision of “Saturday Night Fever” with a $3.00 admission we were only too willing to pay.

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After a long summer hiatus I am back with another piece of bite-size memoir. (Memoir in a 150 word “bite”, no more, no less!)

If you would like to know more about the bite-size memoir project, or Lisa Reiter who initiated it, please check out her blog:

http://sharingthestoryblog.wordpress.com/2014/09/08/goals-or-should-that-be-gaols/#more-1640

Playing Princess

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Fox stole, crinoline, satin and organza dresses, rhinestone jewellery, lace veil, and beaded drawstring evening bag; what more could a woman want? Or a little girl. My youngest auntie would dress me up in all this out-dated paraphernalia from some treasure chest in my grandparents’ house. I had no idea whose wardrobe and accessories these were to begin with, definitely not my grandmother’s as she was a plain dresser. I did not care; to me they were all mine! My Dad suspects they were left behind by Great-Aunt Lily who lived in California for awhile. I was only about four years old when Auntie Louise and I started this fantastical game of dress-up, but I remember bits and pieces of it to this day. To my delight, a couple of years ago my parents found photos of me in splendid bliss as “the princess” and “the bride”.

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This is another piece of “Bite-Size Memoir” ( memoir in 150 words – no more, no less) a writing project initiated by Lisa Reiter.

To learn more about it go to:http://sharingthestoryblog.wordpress.com/2014/06/27/bite-size-memoir-no-8-dressing-up/

Bite-Size Memoir Prompt: Childhood Illness

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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/

 

Big money, little glamour!

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Opening up the white business envelope to see my first paycheque nestled inside was a thrill not to be forgotten quickly. Though minimum wage, it was still three times what I was paid for babysitting kids in our neighbourhood, which was one dollar per hour.

I thought the salary was glamorous, but the work was not. I was one of six students hired to do janitorial work after school each day at my high school.

Every day immediately at dismissal bell we headed over to the janitorial room to pick up our heavy industrial vacuums and rolling carts of cleaning products to get busy vacuuming classrooms, emptying wastebaskets, dusting, cleaning blackboards, and worst of all scouring the washrooms.

The only real perk was the privilege of reading the graffiti on the walls of the boys’ washrooms before we had to wash it off, always hoping never to see our own names.

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This was yet again another morsel of “Bite-Size Memoir” initiated by blogger Lisa Reiter.

Each week a prompt is given for a 150 word ( no more, no less) piece of  memoir to be written.

Check out more here: http://sharingthestoryblog.wordpress.com/2014/06/06/bite-size-memoir-no-6-first-jobs/

Once in a Lifetime!

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Four 14 year old girls dropped off on their own with an old green canvas tent at a campground thirty miles from home for the weekend. What could possibly go wrong?

Apparently many things. According to my parents who absolutely forbade this camping excursion to happen unless they were to accompany us. My parents agreed they would park their RV several hundred feet away well out of sight.

Dropping us off, we excitedly set up the tent, threw our sleeping bags inside, and opened our cooler to have a wiener roast supper over the campfire. How cool were we?

Not as cool as at four a.m. when we woke in the pouring rain to discover we had set up the tent downhill from an incline, sleeping bag, and pyjamas soaked through.

To their credit my parents never came to rescue us. Forty years have passed; I never tented again, ever.

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This was again a piece of bite-size memoir from Lisa Reiter’s prompts, read more about it here:

http://sharingthestoryblog.wordpress.com/2014/05/30/bite-size-memoir-no-5-camping

“Red Ribbons + Mullets”

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Legs moving as fast as possible, like pistons in a luxury sports car, arms pumping alongside. Chest straight and head tall until the very last second lean forward to anticipate the finish. Every boy hoping to be first in the sprints, the senior high elite events.

“GO! GO! GO!” All the girls encouraging their favorites on the sidelines. Important to cheer on your hometown guys during the county track and field meet, but who could resist checking out the boys from all the neighboring towns who came to compete too.

It was the seventies. Short shorts and mullets were everywhere. It was just a matter of deciding who you thought was the cutest guy of all. There were stars, easy to pick out by red first place, and blue second place ribbons pinned on the front of their t-shirts. The losers sat sunning themselves bare-chested, they were definitely noticed too.

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This was yet another piece of “Bite-size Memoir” initiated by blogger Lisa Reiter. Check out her project / more memoir based on her weekly prompts at:

http://sharingthestoryblog.wordpress.com/2014/05/23/bite-size-memoir-no-4-sports-day/#comments