Author: wantonwordflirt

Put On Purple today!

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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.

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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.

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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”!

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

Sjogren’s Awareness: Oh how I wish I was oblivious!

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April is Sjogren’s Syndrome awareness month. As a fellow sufferer said yesterday – it is no April Fool’s joke. In an effort to help educate others about Sjogren’s I will blog some of my journey with this illness throughout the month.

Today on my personal Facebook page, I was asked by a friend how long ago I was diagnosed, and if Sjogren’s was “progressive”.

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I was “officially” diagnosed with Sjogren’s in 2002 (based on positive blood work for 3 different antibodies as well as obvious physical symptoms), however I know that I had it long before then. Significant symptoms began about 12 yrs prior, and lesser symptoms even earlier (as a child/ teen).

After the Sjogren’s diagnosis the docs thought I had Lupus as well, as I met several of the diagnostic criteria for Lupus especially due to sun-related symptoms, including at times the tell-tale malar (butterfly shape rash) on face. Then later, they decided I didn’t have it because I had not developed any signs of “organ involvement” (lungs, kidney, brain most typical organ manifestations with Lupus).

Next they thought I also had Dermatomyositis (another AI disease with specific types of skin and muscle manifestations) due to a very particular type of rash I developed on my hands, Gottron’s Sign, specific to that autoimmune disease. This was diagnosed by a Dermatologist who specializes in skin manifestations of AI diseases.

Eventually they decided I had Undifferentiated Connective Tissue Disease which basically means I have symptoms of both Lupus and Dermatomyositis but not, as they say, “full-blown” disease. Also related to the above I have Raynaud’s Syndrome, and previous episodes of Vasculitis.

Then the most significant event in my medical journey thus far was in May 2009. I was diagnosed with Autoimmune Hepatitis; my immune system attacked and damaged my liver. Hepatitis just means liver inflammation, my illness is not contagious, nor contractible like other “hepatitis”. Quite simply, my body began attacking my liver for no good reason at all.

Immediately after liver biopsy the gold standard to confirm the diagnosis, I began aggressive treatment including initial high dose, then long term steroids – Prednisone, followed by a chemotherapy immune-suppressant drug which I have to be on for the rest of my life, which hopefully as long as I take it and it continues to work, will keep me in a sort of remission.

Additional liver biopsies have confirmed my liver health is not as compromised as it was in 2009. BUT the immune-suppressant drug I take to keep my liver happy has significant side effects including small daily ones like digestive system upset (vomiting / diarrhea/ nausea) ranging to increased risk of cancer especially of lymphomas, and skin cancers. Apparently approximately less than 5% of Sjogren’s patients get AI Hepatitis. I often wonder why I could not be in the small percentage of people who win the lottery instead.

There are some people who only get what are described as the hallmark symptoms of Sjogren’s – dry eye and dry mouth. Too many of us get multiple, systemic symptoms. In speaking to many other Sjogren’s patients it also seems that once you are diagnosed with one AI connective tissue disease you begin to collect others, a domino effect. Over the previous few years I have suspected that I have thyroid and neurological issues developing or undiagnosed which remain under investigation.

Is Sjogren’s progressive? No, not in the sense of diseases such as ALS, which continually ravage the body destroying function to a greater and greater extent leading to inevitable death from that disease specifically. Sjogren’s is however, potentially life-threatening when patients experience organ involvement such as AI Hepatitis or other serious complications. Sjogren’s patients are at 44x greater risk for certain lymphomas. The drug I need to be on for my liver also has increased risk of lymphoma as a side effect. Does this mean I will get lymphoma? No, but I do feel like am rolling the dice. Based on my lotto winnings, I am not often a lucky gambler. Fingers crossed, hoping for better luck this time!

For more info on Sjogren’s: http://www.sjogrens.org

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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princess
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/