wellness

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

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

“Blue-Green Elixir” at InSight2 starting May 14, 2013!

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 I am excited to announce, starting tomorrow I will have an exhibit of 4 poems and 4 abstract paintings in the “InSight2 – Engaging the Health Humanities” exhibit at the University of Alberta FAB (Fine Arts Building) Gallery in Edmonton. InSight2_Invite_digitalThe gallery is closed Sunday / Monday / Holidays and open Tuesday to Friday 10-5 and Saturdays 2-5. This is the first ever exhibit and publication of my work. I am happy to share with you the following abstract describing my work:

“Blue-Green Elixir”   It is my aim to express creatively my experiences, thus making tangible through artistic expression my emotions, thoughts, and memories involving illness. The work is a sampling of documentation of my search for “well-being”, when “being well” is not an expected outcome. In addition to the insight producing the art has provided me, it is my desire that it may also provide the community at large, other patients, and especially health professionals, with insight and understanding of what one patient may experience during their medical journey.  Improved mental well-being throughout the course of incurable, chronic illnesses has become viable for me because of my engagement in artistic endeavors. Hopefully my positive experience will resonate with other patients, and also encourage health professionals, if not to “prescribe” at least perhaps to “advise” their patients of the possibilities of art and medicine working hand in hand.