Sjögren’s syndrome

Seems I am the Sjogren’s groundhog, appearing once a year….

/ wantonwordflirt / 9 Comments

July 23rd is World Sjogren’s Day, a day set aside to honor Dr. Sjogren who identified the illness. The syndrome was officially recognized in 1933,
yet it remains an often undiagnosed/misdiagnosed illness. There is still no specific treatment for Sjogren’s. Because researchers still do not know with absolutely certainty what causes Sjogren’s it remains without a cure. Before you can truly fix something, you need to know how and why it is broken.

So though I have only posted on my blog once since this day last year, World Sjogren’s Day has me poking out of my hole to remind those “in my world” awareness needs to continue so that some day there may be, if not a cure, at least targeted effective treatment.

It is amazing what one can get used to when you experience it daily for years – in my case the chronic exhaustion, muscle and joint pain, the dry sore corneas and mouth, the side effects of chemo meds for Sjogren’s related autoimmune hepatitis. In spite of it all, I am doing quite “okay”.

On this day, my heart goes out to the newly diagnosed who are just learning to accept and navigate the myriad of symptoms and illnesses associated with Sjogren’s Syndrome. And to those who are yet to be diagnosed but searching for answers as they go “shopping” from doctor to doctor looking for one who has knowledge of this still seldom known illness with its diverse constellation of symptoms – do not give up!

For more information read my archived blog posts and/ or contact the Sjogren’s Syndrome Foundation.

Click on chart to enlarge:

P.S. Stay tuned; I plan to be here more often thanks to some inspiration from a writing friend mentor. Reading her recent work has reminded me that writing is indeed “good medicine”. 🙂

Top 3: The best things doctors ever said to me…

/ wantonwordflirt / 5 Comments

If you have been reading my blog from the outset, or read my story in Christine Molloy’s book “Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjogren’s Syndrome”, you might assume the best thing a doctor ever said to me was they definitely knew what was wrong with me.

Believe me, the day my first Rheumatologist told me I definitely had Sjogren’s I felt immense relief and a sense of calm. As memorable as that day was, the Rheumatologist’s words did not make my top three list. My top three are comprised of short sentences uttered by three different general practitioners, or family doctors, primary care physicians, or whatever word du jour they prefer these days.

Here they are in order not by significance, because I give all three equal weight, but in the order in which they occurred:

1. “It’s unfair you got sick.” My long-time doctor of twenty or so years said this to me at the first appointment I had with him after getting my diagnosis of Sjogren’s. I had to go tell him of the diagnosis myself, as he was not the one who had referred me to the Rheumatologist. He had insisted that I did not have Lupus or any other autoimmune connective tissue disease; hence he refused to test me. After a physiotherapist emphatically suggesting I be checked for Lupus, I went to a doctor at another clinic to describe my symptoms. It was this doctor who had never seen me before who sent me for blood work as he thought I should be checked for “Rheumatoid Arthritis and related diseases”. Blood work showing high Rheumatoid Factor (RF) is what led to a Rheumatologist referral, further testing, and ultimately a diagnosis.

When I told my usual doc of the Sjogren’s diagnosis, he said: “I am sorry”. I did not ask for further explanation. His face told me he truly was regretful. I assumed both for me having Sjogren’s, as well as because he did not pursue or make the diagnosis himself. Next he told me it was unfair I had become ill, as he knew I led a healthy lifestyle – eating right, not drinking or smoking, getting rest, exercising. Being raised Catholic, I am infused with guilt and self-blame when bad things happen. I needed to hear the doctor say it was unfair I got sick; it was not my fault. I needed to know I didn’t cause Sjogren’s because I should have eaten more carrots and less pizza, swam 64 laps a day instead of 32, and never miss church on Sunday. Sometimes “shit happens” no matter how healthy you were before, no matter what you did or didn’t do.

2. “You are courageous.” Not long after my Sjogren’s diagnosis my long-time doctor retired from general practice. I again returned to the other clinic to see the doctor who initially sent me to the Rheumatologist. Unfortunately, seven years after my Sjogren’s diagnosis I had blood labs that showed extremely elevated liver function tests. Without delay, the doc sent me to a Heptologist, who diagnosed me with Autoimmune Hepatitis. Yes, again another disease I, nor anyone else I knew, had ever heard of. Unlike Sjogren’s, AI Hep has a standard treatment protocol, but it too is incurable. Without treatment AI Hep is quickly progressive, advancing the liver from inflammation to fibrosis to cirrhosis then death. The standard treatment protocol begins with high dose Prednisone which is then tapered, but continued at a set dose for a full year, to be followed by Imuran, an immune-suppressant chemo class drug most commonly known as being given to kidney transplant patients to stave off organ rejection.

In my mind, there was no choice. I would do the treatment as prescribed. I wanted to live. The liver specialist was clear on the numerous negative effects the treatment could have on my health, how it could damage my body in other ways while helping my liver. Because of the dual personality of Prednisone, the good and the evil, I called it “my miracle poison”. At the time the specialist prescribed it, he did not inform me how difficult it is for many patients to wean off Prednisone entirely, but my local doctor did later. As I was tapering off Prednisone, while initiating Imuran at the same time, my doctor looked up from my file and told me I was courageous. Tears instantly filled my eyes. No one said that to me before; ever.

3. “It sucks balls.” More recently, in 2016, I spent several hours through the night hooked up to a cardiac monitor in the ER of our local hospital while having an episode of atrial fibrillation. Some people who have this do not even know it is occurring, especially the elderly and those with weakened hearts. I have had three episodes thus far; each one was sudden and beyond ignoring. Within seconds, my heart rate triples, blood pressure escalates, and my heart strongly pounds out of rhythm; you can see my shirt move as my heart flops in my chest. Prior to this episode I’d had another lasting from midnight to 8 a.m. when shift change came in successfully cardioverting my heart back into rhythm. It was done chemically via an IV infusion, but sometimes the paddles are used to shock a person’s heart getting the same result. During the 2016 episode they again tried cardioverting with the same drug that worked successfully the first time. I was not so lucky, I did not convert though my blood pressure and heart rate did diminish, they did not return to normal nor was my heart in normal rhythm.

The doctor who was in charge through the night decided I was going to be released with my heart still in a-fib. I was devastated to hear I would be taking oral medication to cardiovert, and sent home, my heart pounding out of rhythm for who knows how long. I was overwhelmed. I wondered… were not Sjogren’s, Undifferentiated Connective Tissue Disease (with symptoms of both Lupus + Dermatomyositis), and AI Hepatitis enough? The thought of having yet another complicated medical issue, especially after a night of no sleep and anxiety, was too much for me emotionally. As I sat propped up on the bed, alone in the room waiting for the nurse to remove my IV so I could leave, the doctor coming on for day shift came to my bedside. It was a young female doctor I had never met before. After introducing herself, she too explained I would be going home “as is”. Tears began to roll down my face. I told her I was crying because I was overwhelmed….having Sjogren’s, AI Hepatitis, and UCTD I thought I had “enough”; now I had to deal with a-fib too. She put her hand gently on my arm, looked into my tear filled eyes and said matter-of-factly: “It sucks balls.” I burst out laughing. Through more tears, I said: “Yes, it does.” What she said was unprofessional, immature, and entirely inappropriate; it was also perfect.

Reflections on World Sjogren’s Day

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July 23rd is World Sjogren’s Day. This day was designated to celebrate the birth of Dr. Henrik Sjogren, the Swedish Ophthalmologist who discovered Sjogren’s Syndrome in 1933. In addition to the acknowledgement of the man who discovered the illness, the day is also meant to create awareness of Sjogren’s and the many faces of the disease.

Last year for World Sjogren’s Day, in an effort to create awareness of Sjogren’s in my own community, I wrote a letter briefly introducing my personal experience with the illness and included a basic fact sheet from the Sjogren’s Syndrome Foundation to enclose with it. In the letter I included my personal contact information and an invitation to contact me if anyone wished to learn more about my own journey with Sjogren’s.

I personally delivered a copy of the letter to each physician at our medical clinics, as well as to all the dentists and optometrists in town (over thirty individuals). Some of these professionals see me on a regular basis for care, I’ve met others at the walk-in medical clinic, and unfortunately I’ve had an introduction to a couple more for emergency care at the hospital.

Because of my many encounters with health professionals in our community I knew many were still not aware Sjogren’s Syndrome even existed. Most of those who had heard of it believed it to only involve dry eyes / dry mouth. Optometrists and dentists usually are more knowledgeable about that aspect of Sjogren’s for obvious reasons. Some medical professionals know Venus Williams has it and she continues to play competitive tennis from time to time, hence their assumption it is “not that big of a deal”.

Imagine having an illness that many medical professionals have never heard of. Imagine they ask you to say the word Sjogren’s again, so they can catch the correct pronunciation. Imagine they ask you to spell it as they whip their cell phones out so they can Google it. Ok, in fairness they may use medical search engines not just Google and Wikipedia as a primary source. At least I hope so. As a patient I certainly refer to more reputable sources of information, including established medical journals and the Sjogren’s Syndrome Foundation.

Imagine how you might feel knowing someone who has never heard of the illness you have is going to be treating the symptoms you are presenting with. Imagine you know more about your illness than the general practitioner doctor, or sometimes even more than the specialist. Sadly some medical schools never mention Sjogren’s at all (this was verified by research in the USA), some general practitioners and Rheumatologists recall a two minute mention of it as just dry eyes and dry mouth.

Imagine that I am not exaggerating. Imagine that last year my Rheumatologist, who is the specialist who would have supposedly received the most education on Sjogren’s since it is an autoimmune connective tissue disease in her speciality, writes a letter back to my local doctor saying “I do not believe the cause of her fatigue is Sjogren’s” (though it should be noted she offered no alternative explanation) when the Sjogren’s Syndrome Foundation physicians have now publicly identified the hallmark symptoms of Sjogren’s being “Dryness, Pain, Fatigue”.

Then the nurses and doctors think maybe have a trust issue or two when receiving medical advice and care. It is not difficult to imagine why that might be!

In defense of the health professionals I must tell you the main reasons “Sjogren’s neglect” persists within medicine. Firstly, because it is not “just dry eyes and mouth”, it is a complicated illness. Much like Lupus, each patient may present with a myriad of symptoms, even while not “looking” sick.

There are no blood tests that specifically correlate with severity of symptoms. Diagnosis is difficult because there is no one test or even group of tests that diagnoses Sjogren’s early and accurately, thus diagnosis is often delayed, sometimes by years or even decades. Misdiagnosis is also common, with fibromyalgia, chronic fatigue, and depression being some of the more common misdiagnoses. Thankfully Dr. Sjogren discovered the Syndrome. Even more people would be suffering today, waiting for diagnosis had it not been made official, and given a name.

Many doctors, even specialists, do not believe serious organ (liver, lung, etc.) complications can occur with Sjogren’s, but it can and does. As I mentioned earlier, even Rheumatologists are not always up-to –date on Sjogren’s care management. This can perpetuate a cycle of ignorance when a Rheumatologist forwards inaccurate information back to a patient’s local physician.

Clinical studies for Sjogren’s lag far behind other autoimmune connective tissue diseases. I have been known to comment, tongue-in-cheek, that the reason you don’t commonly see big fund-raising runs such as Cancer’s “Race for the Cure” for Sjogren’s patients to raise funds for research is because we are all just too damn tired to organize an event or run in one.

Although Dr. Sjogren identified Sjogren’s Syndrome in 1933, it was not until last year, 2016 that a standard of care in the form of clinical practice guidelines for Rheumatologists, Dentists and Ophthalmologists, was generated for the management of the illness in the USA. Even though treatment guidelines now exist, there remains no single treatment protocol identified for Sjogren’s Syndrome. A recent study showed that Sjogren’s had the same effect on quality of life as Multiple Sclerosis. Yet unlike MS, Sjogren’s patients cannot go to their specialist and be told definitely what treatment will be used. In some cases, Sjogren’s is left untreated because the doctor does not take the patient seriously until life-threatening organ involvement occurs. Remission of symptoms is possible, but in most cases Sjogren’s is progressive and in all cases incurable.

So, back to the letter I hand delivered last year for World Sjogren’s Day. You may be wondering what type of response I received. That part of the story is short. Nothing. No response. None. Silence. Crickets.

I was not surprised whatsoever that not a single person specifically contacted me about the letter afterwards. Doctors are busy people. I did however expect the practitioners I see regularly might at least mention it at my next visit. Honestly, even if someone said something derogatory such as a sarcastic “So, you think you are a Sjogren’s expert now?” I would have been pleased because I’d know they at least looked at the letter, even if not reading the information in its entirety.

I guess my hope is if they did not read the information themselves, perhaps they threw it in a nurse’s direction and the nurse maybe had a read before putting it through the shredder. I remain ever the cynic, ever the optimist.

Life Divided in Two

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“A diagnosis of catastrophic illness changes everything. It’s a thick line drawn through your life, separating the before and the after.”
-Heather Summerhayes Cariou (Author – “Sixty-five Roses”)

April 1st heralded the beginning of Sjogren’s Awareness Month. It was my intention to blog a bit about Sjogren’s Syndrome, and specifically my own experiences, each day of April. That did not happen. Here we are on the final day of the month, and I blogged only a few times. I could beat myself up about not reaching the goal I set, but I get beat up enough by other things out of my control including my own body and the symptoms of Sjogren’s.

Though not writing daily, I’m glad I decided to commit to writing about Sjogren’s again because there were several people who contacted me privately, or commented publicly that they had never heard of Sjogren’s before reading one of my posts. I had mentioned to Mr. Wanton, if even one person learned of Sjogren’s as a result of my blog, it would be worth it.

Thank you to everyone who has read, commented, and shared my blog. I appreciate your assistance in spreading awareness, please continue to do so. Sjogren’s currently has no standardized treatment protocol and no cure, perhaps through continued awareness and increased research funding, over time that may change.

In the past I have been reluctant to write about my journey of diagnosis, and navigating the symptoms of Sjogren’s because I felt some people might see me as doing it “for attention” or to garner sympathy. This week I ran across another blogger’s post about how in our society we condone (or at least tolerate) so many types of attention seeking behaviour (one only need think for a moment about reality TV, the shenanigans of political leaders, or the proliferation of  highly inappropriate or risque “selfies” on-line) yet when someone with a mental health issue or other chronic illness writes authentically about their experiences it is often frowned upon, deemed “attention seeking”, or having a “pity party”. That is unfortunate in my opinion; we have much to learn from each other’s honest health “stories”, both from a medical perspective as well as a human / empathic one.

I will be continuing to write about Sjogren’s, but I will also return to writing about other topics as well. As I’ve mentioned previously, I started this blog to write “wantonly” – about whatever grabbed me in the moment. When you have an illness that causes so much havoc with your body, it is hard to ignore. My life is not all Sjogren’s, but Sjogren’s does affect every aspect of my life.

To close out Sjogren’s Awareness Month, I was thinking about what I would want people to know most of all. The first thing is the seriousness of Sjogren’s; it is a progressive systemic disease equal in effect on quality of life to MS. It is definitely life-altering, but can also become life-threatening when organ involvement or lymphoma develops.

Secondly, it requires specific treatment and management individualized to each patient, yet it is a relatively unknown disease among medical professionals including Rheumatologists. In fact, one physician with Sjogren’s herself who does medical school in-service sessions discovered in her area of the USA only one medical school even had Sjogren’s in the curriculum. I have heard other doctors mention they heard the name in med school but had only two minutes of lecture on it. I suspect they were told it was only dry eye and dry mouth, as that continues to be the prevailing belief.

I want people to understand how scary it is to have an illness doctors are so unfamiliar with and to be unable to follow a standard, proven treatment protocol. I want it to be known that even though we may not have cancer, many of us are on a chemotherapy drug or a “biologic” drug, possibly for the rest of our lives. There is no such thing as remission.

On a personal level, I want people to know when I have to miss out on an event it is not always by choice. Each time I miss out on a once in a life-time event important to a family member especially my children, or a close friend, it breaks my heart a little bit more, even if at the time I say “it’s okay”. That if I seem rude when I have to interrupt you and leave immediately when we are standing to chat on the street or in a store, it is because I can’t stand up any longer. When you see me clothed head to toe under an umbrella on a clear summer day it is because being exposed to the sun is risking a disease “flare” that can cause further organ damage. If you knew me before Sjogren’s you might miss the person I used to be; you need to know I miss her too. Sjogren’s drew a thick line through my life, there’s no crossing back.

My Doctor Fantasy (Spoiler Alert: Nothing to do with Dr. McDreamy)

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Thinking about what my blog topic might be today as we near the end of Sjogren’s awareness month, I began to make notes about the guilt of being ill, missing out on events, letting others down and the self-loathing that may accompany chronic illness of any sort, both physical and mental.

Shortly after making my notes, my son arrived with the mail which contained a letter for me indicating a date for a follow-up appointment with a specialist in the city closest to where we live. Unfortunately, it is not close. The hospital that I go to for specialist appointments is three hours from our home. I have a Rheumatologist, Cardiologist, Dermatologist, Neurologist, and Heptologist / Gastroenterologist all at the same hospital.

The letter from this particular specialist had a triggering effect. Emotions I thought were long dispersed bubbled to the surface; lava out of a dormant volcano.

I saw her for the first time last July for a consult after I had been for an overnight emergency room stay at our local rural hospital. I’d previously been seen in this particular hospital out-patient clinic by a kind, compassionate Nurse Practitioner, in whom I had the utmost trust and confidence. I guess that is why when I went for the appointment with the specialist herself I was expecting the same type of person. I was wrong.

The specialist began by asking me questions, and then refused to let me answer. Next she sat up perfectly straight and leaned forward, telling me how things were going to proceed, stopping only to ask if I had questions about she had just told me, but once again not actually answering my questions or addressing my concerns. I became frustrated and started to cry momentarily. Because I’m polite, or felt guilty, or maybe just because I’m Canadian or some other bizarre reason, I apologised for crying.

I could tell she had no clue why I had come to tears. From her response it was obvious she assumed I was upset about the diagnosis and the incidents that had occurred at the rural hospital. Of course, I was also not pleased about that, however what briefly turned my water works on in her office was her arrogant demeanor and total disregard for anything I said or attempted to say in between her “telling me” what had happened, and how it would be going forward.

After only a matter of minutes in the exam room with her, I realized trying to say anything to her whatsoever was an exercise in futility. She had an agenda and she was going to just run it right over me, back it up and do it all over again. So, I decided to stop speaking to her. She looked pleased.

I’m sure she assumed I was now listening to her every word implicitly and that my silence indicted utmost agreement. What actually was happening was I was engaging in a fantasy. I was imagining grabbing her by her hair, throwing her out of her chair, slamming her head repeatedly onto the linoleum floor, saying “Shut up, and listen to me for five seconds, bitch!”

Okay, there goes any image anyone ever had of me being sweet, innocent, or polite. I don’t think in that moment I have ever been so frustrated in my entire life. As I then glanced down at the floor while she spoke, I examined her fabulous four inch stiletto heeled black pumps and envisioned her in the Three Billy Goats Gruff fairy tale story – a white-coated, black spike heeled / hoofed goat. Clip-clop. Clip- Clop across a foot bridge, intimidating everyone in her path, even the trolls.

Mr. Wanton was present at the appointment, but he was silent throughout. Soon enough she dismissed us. Stopping once we were a distance away down the hall, I turned to Mr. Wanton, asking what he thought of the appointment. He just shook his head. Asking why he had not said anything, he replied, “There was no point.” I was in agreement. I then told him what I had been fantasizing when I gave up trying to have a discussion with her. Mr. Wanton’s eyes widened. We’ve been married for quite some time, he has never heard me speak of anyone in that way. On the drive home I said, “I never want to see her again.”

Today as I read the letter I re-lived that appointment. My first reaction was that I was not going to see her again. Mr. Wanton reminded me I didn’t have to, I could get another doctor. But it is not that simple when the city you go to for specialized care is small. There are a limited number of specialists, especially those who specialize in a particular group of patients. Today for the first time, I had the thought perhaps something had happened in her life before we arrived at the appointment that day which was difficult for her. I have the urge to humanize her. I want to believe she just had a bad day, and took it out on me. I told Mr. Wanton I will give her one more chance. This time, I won’t be blindsided.

I wish I could say this is the only time I have been disappointed by a physician, but it is not. It is heart-breaking to me that patients are all too often treated with so little respect. Being a physician is without a doubt stressful and difficult, but so too is being a patient. I’d like to believe we could meet each other halfway, with compassion and empathy. I’m not so sure.

Recently I began reading a new book by Danielle Ofri, M.D. called “What Patients Say, What Doctors Hear.” Dr. Ofri cites a research study showing, on average, doctors first interrupt patients within 12 seconds of the patient speaking. Equally disturbing, yet another study showed results indicating physicians “re-directed” the conversation from the patients primary concern in less than half a minute (again on average) into the visit. The fact a physician is bringing the topic of doctor-patient communication to the forefront is an encouraging sign. I can only hope better days are ahead, and I will never have doctor abuse fantasies again.

Celebs + Sjogren’s

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When first diagnosed with Sjogren’s Syndrome in 2002, I sought out information and support on-line, quickly discovering a list-serve e-mail message group of patients. The group, including a couple physicians who had the illness and a very well-informed dental hygienist, were a wealth of knowledge. More recently I have joined a couple Facebook groups for the same reasons – information sharing and support.

Back in the early 2000s there was a recurring wish among the people involved in the Sjogren’s e-mail message group. Though no one would wish Sjogren’s upon anyone, there was a hope that eventually a celebrity would be diagnosed with it. Someone who was a “household name” who would come forward publicly, speak about the illness to mass media, hence creating public awareness in a way no one else, including the Sjogren’s Syndrome Foundation, could possibly hope to do.

One only need think of Michael J. Fox’s impact on Parkinson’s disease awareness to understand why so many patients had this wish. Well, it did come true. But in a certain sense it was almost a case of “be careful what you wish for”.

In 2011, Venus Williams pulled out of a major international tennis tournament, shortly after that she went public with her diagnosis of Sjogren’s. Like most patients, she described asking the doctor about her initial symptom – fatigue – numerous times only to continue to be undiagnosed for a few years until she had multiple symptoms that made it clear what she was suffering from.

This month a Dr. affiliated with the Sjogren’s foundation in the USA was interviewed on a TV news program; he mentioned Venus has a “mild case” of Sjogren’s. Being an international Olympic calibre athlete, I believe no one will be privy to Venus’s specific symptoms or treatment (no standardized treatment protocol currently exists) until after she retires. Fortunately for her, she has been able to return to elite competition albeit by reducing her schedule of tournament play.

At last, there was a celebrity face to “our disease”. The mixed blessing of Venus’s diagnosis became clear to me upon hearing people, including physicians say: “Sjogren’s, that’s nothing, Venus Williams has that and she still plays tennis.”

(You don’t know how much I want to punch a Dr’s lights out when I hear that. It ranks right up there with “if your mouth is dry just drink more water” or “if you are so tired maybe you should get more sleep.” If only it was that simple.)

Awareness of the name Sjogren’s Syndrome was created, but obviously what also came with Venus’ disclosure of her diagnosis was more misunderstanding of how severe the illness could be.

The irony of physicians making comment of Sjogren’s not being “that bad” because of Venus, is they are often the very same ones who tell us the reason we have the symptoms we do is because we are out of shape and need to exercise more. Argh! There is no one who was / is in better shape than Venus Williams, yet she still struggled with fatigue, and pain. She did not have the symptoms because she was “de-conditioned”; she had them because of the illness.

More recently, Carrie Ann Inaba, a judge on “Dancing With the Stars”, revealed she too has Sjogren’s. Like Venus, and a huge majority of Sjogren’s sufferers she too went to her Dr. with initial complaints of what she described as “incredible and random fatigue”. Carrie is on a common treatment for the disease called “Plaquenil” which is actually an old anti-malarial drug that was accidently discovered to help with certain auto-immune diseases including Sjogren’s and Lupus. Carrie Ann has become the Sjogren’s Syndrome Foundation Awareness Ambassador and Spokesperson.

I’m glad Venus and Carrie Ann came forward to create awareness, though there are people who will always judge their friends, family, or patients who have Sjogren’s based on what they know of the celebrities. Just like Lupus is considered the disease of a “thousand faces” because every patient can have such a unique constellation of symptoms and disease progression, so too does Sjogren’s.

One must also remember the resources the celebrities may have to help them cope with Sjogren’s are probably not those of the “average” patient. As one friend originally from Europe said to me: “I bet Venus has the best doctors in the world, probably in Switzerland.” Guaranteed she has the best medical team, wherever they might be located.

My husband once asked me how I could possibly spend 60 million if I won the largest Canadian lottery prize. I did not hesitate even a second before replying: “I’d hire staff.” And indeed I would, just like I’m sure Carrie Ann and Venus have. Coping with Sjogren’s would be so much easier if I had my own housekeeper, chef, driver, massage therapist, personal trainer, physiotherapist, personal assistant…

 

A mouth guard, Mr. Wanton, a pretzel & Me

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Last week, I did actually have a dry mouth incident that left both Mr. Wanton and I in hysterical laughter. (If you are my mother, you should stop reading right here.) I had been to the dentist and on Friday afternoon (several hours after dental office had closed for the weekend) I put my night mouth guard on just because I was thinking about wearing it again (I hadn’t for quite awhile).

(No, Mr. Wanton did not say that to me. It would have been nice if he had though.)

Anyway, I popped it on my upper teeth. It was a bit snug but still comfortable enough. Then, I went to remove it but it wouldn’t budge. I recalled it always being a bit difficult, so I didn’t panic. Working at the edge again with my finger, I realized how dry my mouth was. I kept pulling at it, trying different locations along my upper gum line and teeth. My mouth and teeth were dry, so I started to panic a little thinking there was no lubrication between the teeth and the guard to help slide it off.

After trying to pry it off for over half an hour, I went to Mr. Wanton in the other room, and said through near tears: “I know this is ridiculous. F*** my life. What bloody next? I got my mouth guard stuck on my teeth and I cannot get it off, it’s Friday and I am going to be stuck like this until Monday when the dental office opens!”

He started to laugh, hard. I was furious at him for laughing at me, but I also realized the ridiculousness of my predicament and I started to laugh uncontrollably as well. Every time I started to say something, we’d both start laughing again. When we finally recovered, he said: “I can drive you to Dr. S’s house to get it off.” Our dentist is a “neighbour” about five miles down the country road. I said “No, I’m sure he doesn’t have dental tools at home.”

Then I saw a light bulb go on over Mr. Wanton’s head. He pulled a kitchen drawer open and took out a butter knife. Holding the knife in the air, he stepped toward me saying: “Here, I’ll do it”. Once again I burst into uncontrollable nervous laughter, but through it I managed to say: “No way, you might break my teeth! I’ll stay like this until Monday.”

(Even though I admit by then the mouth guard was feeling too tight, hurting my gums a bit, and I’m not sure if it was the stress, maniacal laughter, or the mouth guard, but I could feel a headache coming on. I knew there was no way I could possibly keep it on until Monday.)

So, Mr. Wanton said, “Fine then” and wandered off shaking his head. I went into our bedroom, sat on the bed and pried at that thing until finally I felt a glimmer of hope as over a gold crown covered tooth it finally budged enough for me to get a bit of leverage on it. Then with one desperate yank, it came off completely. Perhaps it was smoother there, or not quite as close a fit in that spot. Whew. I threw the mouth guard in the garbage.

The very next day, I took a bite of a pretzel chip, a new product I bought to try, biting it in two. The piece I bit off went to the roof of my mouth and got stuck on my palette, literally lodged there instantly. Like the previous day, I walked over to Mr. Wanton and said: “Would you believe I just got half a pretzel chip stuck on the roof of my mouth?” He started laughing, again. No matter how hard I pushed on it with my tongue it wouldn’t move. I tried water, nothing happened. He said: “Just pull it off!” I said: “Can’t you see I’m trying!” Finally after several attempts I managed to stick my finger on it, getting under an edge and dislodging it. I am now sworn off pretzels and mouth guards…for life.

(I do realize the meme says “pretzel’s” and it SHOULD be “pretzels”….either way you spell it, right or wrong, the pretzels did make me grumpy…..AND anxious.)

What hockey players and cowboys can do that I cannot…

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Last year during Sjogren’s Awareness Month I posted about dry mouth symptoms. People suffer from dry mouth for a multitude of reasons. For those of us with Sjogren’s, dry mouth occurs because our own immune system attacks the moisture producing glands throughout our body, including the salivary glands. We need saliva as it has antifungal and antibacterial properties, in addition to buffering capabilities to neutralize the acid in the mouth which causes cavities.

Saliva is the moisture that is in our mouth. Some refer to it as “spit”. I won’t perpetuate any stereotypes by naming who those people might be. 😉 (Okay, changed my mind about that, when I needed a title for this blog post!) Anyway spit, or saliva, helps protect both our teeth and mouth. In addition it is the important first step in digestion as it begins the process of helping us break down food and sends it down our esophagus to our stomach. Okay, so that’s my basic biology class, human anatomy digestion 101 lesson for today.

In earlier posts I mentioned waking in the morning to painful tight muscles, stiff achy joints, and eyelids glued to corneas causing discomfort or even pain; well you can add dry mouth to my list of first symptoms of the day.

If you’ve never experienced severe dry mouth, you might think it is just a matter of being thirsty and the solution – having a long sip of water  – doing the trick. It is much more complicated. When I wake up in the morning my tongue is usually stuck to the roof of my mouth, my cheeks stuck to the sides of my teeth, and my throat often feels as though it is closing. My mouth feels parched. I am also thirsty upon waking, so I do drink water first thing when I get up to “unglue” my cheeks, tongue and throat as well as quench my thirst.

Sometimes when I wake up I discover I have developed painful mouth sores or ulcers. These are not a symptom of Sjogren’s according to my current Rheumatologist, but of Undifferentiated Connective Tissue Disease which I also was diagnosed with. Usually they occur on inside of lower lip, side of cheek, or on very back side of palette / roof of mouth. Typically they last a few days, although some are more persistent. Actually my Rheumatologist is incorrect, they are often yet another symptom  of Sjogren’s . As if we don’t already have enough pain and need more in an already uncomfortable dry mouth.

There are numerous dry mouth products available, none of which I have been too enthused about. Every mouth is different and each patient needs to try out the myriad of products to see which suits them best. There are prescription medications to stimulate salivary flow; however I am not prepared to risk the side effects of them, preferring to take my chances with meticulous dental hygiene and sipping water throughout the day.

(Please remember that none of the information I have been detailing in my blog about Sjogren’s is a substitute for medical advice. Please ensure you seek professional medical advice from your own Dentist, Doctor, and other professionals. I am strictly relating my own personal experiences.)

One thing I found to stimulate some salivary flow is massage. There are people who go specifically for massage and / or acupuncture to increase flow of saliva however you must go to someone with intensive training in the technique; unfortunately those people are few and far between. However, I have found during a regular massage, as the therapist works with lymphatic drainage technique and upward strokes of the hands up my neck and jaw I often experience what I can best describe as two miniature water fountains turning on at the back of my mouth near the jaw line. After being so dry, the feeling of sudden spurting of water in the back of one’s mouth, albeit for seconds, is wonderful.

Beyond being uncomfortable, the risks of having an extremely dry mouth include high risk of tooth decay resulting in loss of teeth and necessity of implants or dentures. The protective qualities of saliva being absent is one reason for this, another is that without saliva food adheres to the teeth easily.

Imagine eating one small cracker and trying to swallow it. Instead of it disintegrating in your mouth, and you swallowing the entire piece you instead end up with more than half the cracker stuck onto your teeth. Well, first of all with Sjogren’s you usually cannot swallow any of the cracker without water, but even after you drink the water, the rest of the cracker stays stuck on your teeth. Sometimes, even when brushing with an electric toothbrush, the food stays stuck so it takes multiple brushings to get it entirely removed. I have worn out more than a few electric toothbrushes.

Another more frightening risk of living with next to no saliva is choking on food particles. When I eat (as you can imagine as I described the food debris left behind on teeth) I don’t have saliva in my mouth to help wash food down my esophagus, so often a tiny particle of something (especially lettuce or tiny carrot particle for example) adheres to the tissue on the very back of my mouth or even in my throat. Often it is so tiny I don’t even feel it until it suddenly dislodges and I start to choke on it as it is going where it shouldn’t be “down the wrong way”, or goes part way down my esophagus then gets stuck again farther down. In Sjogren’s lack of moisture is often an issue throughout the entire body including the esophagus. The coughing episodes that follow as my body rids itself of the particle of food is not fun for me, nor has my family become used to it no matter how many times it happens.

Coming next post: a lighter look at dry mouth – because sometimes you just have to laugh at yourself.

If you wish to read previous posts I have written about my dry mouth experiences here are the links below, as well as a link to dry mouth info from the Sjogren’s Foundation:

Causes, Diagnosis, + Treatment of Dry Mouth

My post from last year: “If you can swish or spit, celebrate!”

Older post re: my diagnosis / dry mouth: “A Diagnosis that is Hard to Swallow”

Best advice ever from a Rheumatologist – you don’t even need a disease to benefit!

/ wantonwordflirt / 5 Comments

I will be ever grateful to the Rheumatologist who first diagnosed me with Sjogren’s in 2002. He finally put a name to the symptoms I’d been suffering from for at least a decade, and validated my concerns. However, I did not realize at the time, he was not very knowledgeable about the potential severity of Sjogren’s, or its treatment. In fact, he told me nothing of potential organ involvement, increased lymphoma risk, and other more serious consequences that could occur in years to come.

Upon diagnosis he explained I would require vigilant use of sunscreen and to stay out of the sun as much as possible (due to presence of the SS-A antibodies in my blood causing extreme sun-sensitivity), use over-the counter eye drops for my eyes and dry mouth products for my parched mouth if required. That was all. He did not address the fatigue, or the muscle and joint pain whatsoever.

I told him I had been keeping up with light exercise – a bit of walking, “Curves” gym workouts, and day-to-day housekeeping activities even though they wore me out. I asked if there was something, anything, he could give me to help with the pain, especially muscle pain which was more prevalent at that time, than joint pain. After all, it was those complaints along with the unrelenting fatigue, which brought me to the doctor over and over, not my mouth, eyes, or skin.

I did not expect to hear what he said next: “Actually, I have some patients who have told me that yoga has helped their pain more than anything else.” All I said was “okay”, thinking we had no yoga classes in the small community where I lived, at that time. I could do it on my own, but I thought I would just continue with Curves, and get regular massages which were soothing but had short-lasting results. So that is what I did, continued on with what I had been doing.

Eventually, after a few years I had trouble washing floors, scrubbing bathrooms, etc. without ending up stiff and in pain, leading me to regular physiotherapy visits. We hired a weekly housekeeper, which was cheaper than physiotherapy so I did not feel guilty but I still found my body getting very sore. Soon I was back to physio even though I was no longer doing household chores.

One day when going to the bank, I saw a new sign in the window of the same building: “Yoga for You”. The words of the Rheumatologist seven years earlier were suddenly back in my mind. By this time, yoga (thanks to Lululemon yoga pants! ha ) had gained mainstream popularity even outside of cities. Still, after spotting the sign I continued to walk and drive past it for about a year, thinking I could never do yoga with my tight sore muscles.

Finally one day, I decided to go in to get information about the classes, to just give it a whirl. I don’t recall what was in my mind in that moment, why I decided to try. Perhaps I was in so much pain I was desperate, or maybe it was a relatively “feel good” day and I was optimistic I could do yoga after all. Either would be plausible. The owner / instructor / yoga therapist – Tracy, was welcoming. She recommended “Gentle Restorative Yoga” as being best for me. It was time to test out the Rheumatologist’s advice.

I’d like to say I went to my first class and found it pleasurable, but I did not. The session started out easy enough – on the mat, but then we sat along the wall. Tracy said we could sit with our legs in any position. I saw some people sitting cross-legged so I did the same as we began to stretch our neck, with our head and back supported against the wall. Within 15 seconds of sitting cross-legged my hips were screaming. Tracy had said to “listen to your body” at the outset. My hips were definitely hollering “get out of this position”, so I stretched out my legs. Relief. When my body was not launching a protest during the first class, my mind was racing with thoughts. I had true “monkey mind”, as yogis call it. There were however enough positions, including Child’s Pose, Heart-Opening, and others in which my body was supported enough by a bolster, blocks etc. so I could actually relax and release into the pose. Again, I felt relief.
Though my first class was not as gentle on my body as I hoped, ever the optimist, I decided I would sign up for one session of several weeks to see how my body would respond. That one session of one hour per week, has now turned into two, hour and half classes, per week. I have been attending classes regularly for over six years now.

Additionally at home, every morning before I even get out of bed, I do 20-60 minutes of gentle restorative yoga poses to alleviate some of my morning joint stiffness, and muscles aches. Though I enjoy doing the poses at home, the yoga studio is where my body and mind respond best. It has become a sanctuary for me. Just entering the studio I sigh to let go of the rest of my day, breathe deeper, and relax. Instead of 15 seconds sitting cross-legged, on a good day, I can now do 15 minutes. Some days my “monkey mind” is busy for more than half a class, but sometimes I can let the thoughts come and go easily until they disappear completely, allowing me to focus only on my breath. My breathing is deeper, slower, and from my “belly”. An echocardiogram tech recently said during my echo, “wow, you are a good breather”; I knew why and couldn’t suppress a grin.

The Rheumatologist’s advice (well actually it was his patients’ advice  – love and light to you all) was right – yoga is helping me with my Sjogren’s symptoms more than anything else. Though I still have pain, it is so much less if I keep up with my yoga practice (when Tracy takes vacation break I do feel the difference). And on the days the soreness is less tolerable, yoga has also given me the mental coping skills to let go, and just focus on breathing from my “belly” to relax. Yoga has been life-changing for me. I cannot imagine my life without it.

“Yoga teaches us to cure what need not be endured and endure what cannot be cured.” B.K.S. Lyengar

 

Note: As with searching for a doctor who is a good match for your needs, so it is the same with finding a yoga class with “goodness of fit”. Don’t go to what I call regular, basic class – “pretzel yoga” – if you need props and gentle poses at least to start off with. If you think yoga may be helpful for you, do not be discouraged if the first instructor, class, or studio environment is not meeting your needs – try another and another. Listen to your body, it will tell you when you have found the right one.

If sleeping becomes an Olympic event, I’m going to win!

/ wantonwordflirt / 4 Comments

Should the subject of sleep and insomnia come up when Mr. Wanton and I are at a social event, he is sure to say: “My wife is the best sleeper I know. No one looks happier when sleeping than she does.” I never contradict him, nor will I ever argue it is not true. Instead, I have been known to reply: “Yes, if sleeping were an Olympic event, I would be the gold medal winner!”


(What Mr. Wanton thinks I look like when sleeping….yes, smiling.)

80% of Sjogren’s patients have persistent fatigue as a symptom, according to a recent Sjogren’s Syndrome Foundation study (2016), making it the third most prevalent symptom after dry eyes and dry mouth. It is such a common complaint, fatigue is now considered a “hallmark symptom” of the disease.

As I mentioned in my last post, it was indeed the first symptom I noticed, the one that lead to my repeated visits to the doctor as I sought to discover what was going on with my body. In hindsight, I had dry eyes and dry mouth at that time as well, but the progression was so slow I did not notice. Overwhelming fatigue and soreness throughout my body were much more difficult to live with, and ignore.

After a day of “dragging my carcass around”, as both Mr. Wanton and I like to refer to it, nothing brings me more pleasure than crawling into my bed. Admittedly, I am a creature of comfort come the end of the day. And I have a definite routine for how I get my tired and sore body comfortable at bedtime.

Before I use bathroom for the last time, and put my “eye goop” in, I heat a couple of “magic bags” in the microwave, then I crawl in to my bed which has the softest finest thread count flannelette sheets on top of a quilted faux down mattress cover. I just noticed I called it “my bed”; I do so frequently without intention, regardless of the fact I share it with Mr. Wanton because I guess it is just that important to me.

So, I climb into the king size bed, and roll on my right side (I have a phobia of going to sleep on my left side and feeling my heartbeat, since having some severe atrial fibrillation episodes at bedtime), putting a body pillow between my knees and against my torso, then I put the heated bags on across my low back + hip area. Then I put my head on my pillow which is the most incredibly soft pillow I could find, took years to get the right one but it was so worth it. I might love that pillow more than Mr. Wanton.

A few months ago at book club we read a dystopian novel. At one point during the discussion, the facilitator asked us: “if you had time to take only one item from your home, what would it be?” Without hesitation, I answered “my pillow”. Everyone looked at me, disbelieving, speechless. All I said was “I love my pillow”. That was my answer because I know if I could have my all-time favourite pillow and get sleep, perhaps I could survive the apocalypse. I’m surviving Sjogren’s, so why the hell not aim even higher?

For the most part if I have a “regular day”, meaning no extra or out of the ordinary activities, I can fall asleep relatively easily, the aches and pains of the day relieved by heat on my back and hips, the softness of my bed, comfortable bedding, and exhaustion leading to quick sleep for eight –nine hours without waking for more than seconds at a time to shift positions or add eye drops because I feel my cornea getting stuck to my eyelid, then boom, back to sleep immediately. I would like to report feeling refreshed and pain free when getting my full night’s sleep, but it would be a lie. I never feel rested no matter how long I sleep, or how soundly. Never. I begin every single day feeling tired, and sore.

I am one of the fortunate patients who is able to sleep. Many, many Sjogren’s patients report difficulty with falling and staying asleep for various reasons such as joint pain, dry mouth, headaches, restless leg syndrome, neuropathic pain, etc.

If I have a day with even one slightly non-routine activity that has added more soreness to my joints and muscles, I can have difficulty, and be awake for hours trying to get comfortable enough to ignore the pain and fall asleep. Sometimes, that involves using topical pain relief products or OTC pain meds (though because I also have autoimmune hepatitis I try to avoid them).

Mr. Wanton claims I “run around all day”, until I am “ready to drop”, then “jump into bed”. What he actually means is I move at a snail’s pace, followed by some sloth like hours prior to bedtime, then yes, I do drop into bed. His perception of me moving all day is not because of me running anywhere, but because I find being in ANY one position for any amount of time uncomfortable. I get stiff and sore. His scientific test for my amount of movement being abnormal is that I cannot sit still without moving, and if a TV program is more than half an hour I need to get up and move around, or do something to distract myself from the pain.

Often I have been asked if I nap during the day. The answer is no. I have attempted the art of napping, but never mastered it. I think my difficulty is falling into deep sleep rapidly, so upon waking from a daytime nap I am groggy to the point of feeling unwell. A friend in California told me her naturopathic doctor says if you are unable to sleep during the day, a period of even twenty minutes rest in a horizontal position is restorative for the adrenal glands. I have not researched to discover the truth of this information, but certainly rest periods are healthy and essential for me, and all other Sjogren’s patients I know.

Sleep may be what I love doing more than any other activity. I realize life is short, and hate to think I’m sleeping so much of mine away, but my body and mind crave it. Sleep is my escape from the fatigue and pain that plagues my every waking moment.

Coming soon: The best advice a Rheumatologist ever gave me; plus how do fatigue, joint pain, and muscle soreness limit my daily activities; how I cope with sunny outdoor activities; how my life has changed; and more.

P.S. I originally intended to blog daily for Sjogren’s Awareness Month but yesterday I was too tired, and too sore – my fingers especially were not happy, so I took a day off.