Selective memory from high in the sky…

I am a mother to my children, a daughter to my parents, so even though I am an adult, as long as my parents remain alive I will be a child. Because of this dual role, I recently became acutely aware of how what we hold close in memory may well depend on how old we were and what emotional significance the initial experience had for us at the time. What memories we hold close to our hearts as parents, may be of little relevance (or reverence) for our children, and vice versa.

I suspect if I asked my Dad what his favourite or most deep-seated memory was of me growing up, he would say my birth first and foremost. I have often heard the story of my arrival repeated by other family members. In his euphoria upon learning he had just become a Dad (remember back in the early sixties the father remained outside the delivery room waiting for the doctor to come out and announce the birth), he immediately called either his parents or my mother’s parents. When they asked: “What did she have?” My Dad’s excited reply was “A BABY!” Of course what they wanted to know was whether the baby was a boy or a girl. His reply affirms my belief that he was just as happy with my arrival as he would have been with a son.

Most parents would say that their most vivid memory was a child’s birth, especially if it is their first born, or in my father’s case, his only child. Then, the next most memorable part of my childhood years I am guessing he would say might be our trips when we spent two entire months of summer camping across Canada, or the two times we drove to California from our home in northern Alberta. Of course I do not remember my birth. I do, however, have many cherished memories from those long distance trips as well as camping trips at lakes a half hour or so drive from home, but one of my most recurring flashback memories of my Dad probably holds little space in his mind.

Not recalling exactly how old I was at the time, I do know this particular memory was definitely from the early 1970s. My Mom was not a morning person, and on weekend mornings she would sleep in as long as possible. When I was still too young to be left at home unsupervised while Mom slept, Dad would take me with him to do errands or I’d have toast and orange juice at the hotel cafe while he had Saturday coffee with other men from town. I still remember watching the advertising signs for local businesses that were attached to the clock on the cafe wall flip over and over. I spent the time mesmerized, predicting which ad would appear and flip over next.

One Sunday, our little municipal airport with its nine private airport hangers hosted a Fly-In breakfast. The event was to welcome pilots from other areas, inviting them to “Fly-In” for camaraderie with fellow pilots, check out the airport, and enjoy a pancake breakfast upon arrival. The event was also open to the general public. I assume it was a sleep in day for Mom having gone to Mass the evening before, so even though by this time I could have stayed at home with Mom, I was looking forward to having pancakes for breakfast with my Dad.

Soon after devouring my pancakes, I discovered one of my best friends arrived at the airport with her family. By this time, I also discovered plane rides could be purchased. Approaching my Dad to ask him if I might be able to go for a ride, he said sure, and did my friend and her older sister want to go too? I was overwhelmed with the possibility of the three of us girls going up for our first plane ride together. He said he would pay for all three of us; they just needed to go ask their parents if it was okay. In what seemed like two minutes flat they found their parents in the crowd and returned with the news it was a go.

My Mom was not there to voice approval or disapproval, and there were no such things as consent forms yet for such excursions, so after Dad paid the fee, all we had to do was wait for the pilot to land back on the runway, and pick our seats in the four seat plane.

The flight did not last long. I am guessing maybe 15 minutes total, including take-off, passing over St. Paul, then turning around to head back to the airport. Usually we were a chatty trio but once in the plane we were quiet, all was silent except for the constant hum of the plane. I loved seeing town from the air, the Catholic Cathedral steeple towering above everything else. The buildings, the vehicles, the streets down below were familiar to us; from above all seemed both minuscule yet magnificent. Each dog in a yard, person on the sidewalk, cow in the field, a tiny part of something bigger. We were excited to see our school, then my house, then my friend’s family farm just past the outskirts of town, as the pilot made a wide turn to return us back to earth. What a thrill it was to see our world from the sky above. On that day I thought my Dad to be generous and extravagant.

(Sadly we have no photos from that day, but here is a recent one of my Dad about 45 years later. Thanks Dad, for that first time in the sky. Love you.)

I love pizza, yoga and my Mom.

You cannot be on social media today without being reminded tomorrow is Mother’s Day in Canada. Like Christmas, Mother’s Day is not a day of celebration for everyone. For many it is a day of remembrance due to the loss of a mother, if not through death perhaps through estrangement. Sadly the reality of life is that days of celebration are not all-inclusive. Even those who are a mother themselves, or those who have a mother, may have reasons not to celebrate.

I do not take the fact I still have a mother for granted (she is nearing eighty, though without a doubt I know she’d rather I say she is just over seventy-five), but as I am reflecting upon Mother’s Day I realize I don’t think I’ve really ever told my Mom what it is I admire the most about her. Today is that day.

My Mom always told me when she finished high school she had only three choices of career: secretary, nurse, or teacher. She was not good at typing and did not want to work around blood, so her choice was obvious. Because there was a serious shortage of teachers when she graduated high school, she became as they were called back then – a “six week wonder”, attending summer school in preparation to teach a class right away in September. My Mom began teaching school in a small rural community in the late 1950s when she was just seventeen years old. She graduated high school at a young age because she had skipped a grade in school.

The fact that she took on the responsibility of teaching, and did the job well is amazing enough, but the fact she continued to do so for decades until her retirement in her mid-fifties makes it even more so. While teaching full-time she also completed her Bachelor of Education degree doing evening and summer school classes. Later in life when I discovered Mom was a life-long insomniac it boggled my mind to realize it had not been easy for her to get up early every school day, teach all day, make supper at home, then continue her own studies in the evening. She had, and continues to have incredible willpower. To me, that strength and perseverance is her most admirable characteristic.

Though some might say it was not so difficult (after all she only had one child of her own) Mom had her share of other worries during the span of her career. By the time I became a teenager, Mom had lost both her parents within a span of two years. Her Dad’s death was a long suffering one due to pancreatic cancer, and her Mom’s a sudden, unexpected one due to a smouldering house fire. Mom’s only sister (separated and with no children of her own) was diagnosed with metastasized breast cancer, surviving for years but often requiring emotional support especially during prolonged hospital stays. Mom never took a leave of absence during these difficult times but continued with her teaching responsibilities, filling familial ones in between.

Another example of Mom’s willpower was when she decided to quit smoking. She had started as a teenager. Remember, back then doctors didn’t even advise pregnant women to stop the habit, and they even smoked inside the medical clinics and hospitals. However, when it was discovered that smoking increased cancer risk, Mom signed up for a seven day smoking cessation workshop for seven consecutive nights. I was around eleven years old then; I still remember she was grumpy and short-tempered for a few days. She was successful though, she never smoked again.

Likewise, when the news reported butter was not good for you and caused high cholesterol – BOOM – Mom stopped eating butter. Mom was diagnosed with osteoporosis at quite a young age, in hindsight probably due to having undiagnosed celiac disease for years. Learning it was important to build bone density via weight-bearing exercise, she began to walk regularly and joined a Curves gym when it opened in her community. During inclement weather she walks indoors on the treadmill. Prior to Curves closing she had registered around 900 workouts, most done in her seventies. I know few people of ANY age who are so diligent with their exercise and nutrition habits as my Mom. When she decides to do something, she does it, period. Without a doubt her strong willpower has served her well. I want her to know it has not gone unobserved.

A few weeks ago I asked my Mom to read a story I’d written for a short story competition. After reading it she sent me an e-mail saying she “loved it”. I asked her to tell me what she loved about the story. It wasn’t enough for me just to hear she loved it, I wanted to know why. I wanted to know she actually loved it, and was not just saying that without reason (except for being my Mom).

We live in a world where the word “love” gets thrown around frequently. Don’t get me wrong, that IS a good thing. I love pizza and can tell you why. I already told you a few blogs ago why I love yoga. Telling someone we love them has extra meaning when we let them know exactly what it is we love about them. According to palliative care experts, at the end of life what people most want to know is that their life mattered, had some meaning, and that they were loved. I don’t think we should wait for the end of life.

I love you Mom. Now you also know one of the reasons why.

Life Divided in Two

“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)

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

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

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…

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!

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!

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.

Road to Sjogren’s Diagnosis was Exhausting

Endless, unrelenting fatigue and sore muscles were the symptoms that first had me seeking help from the doctor, followed by joint pain not long after. I began discussing these complaints with my family doctor in the early 1990s. At the time I had three young children at home; I worked full-time, and was a volunteer involved with my children’s extra-curricular activities.

Although these symptoms started mildly, they became a source of concern as they continued to escalate in severity despite my healthy lifestyle. I did not drink or smoke, slept really well for eight hours per night, ate nutritious meals, and got regular exercise. Still I did not feel well. My doctor told me I was a busy mom, and hence my fatigue and soreness. He did a few blood tests to ensure my iron levels, B12, and the basics were all okay, all came back normal. He said I did not have Fibromyalgia, nor did I have chronic fatigue. I believed him, but I also knew I was tired and sore all the time. Something was not right.

In desperation to get relief I went to physiotherapy. I told the therapist about my soreness and fatigue and asked if she could possibly provide treatments that might be helpful. After listening carefully, she asked numerous questions, finally ending with, “Have you ever been tested for Lupus?” I explained I had requested testing for autoimmune connective tissue diseases but the doctor assured me I did not have Lupus, or Rheumatoid Arthritis, which by this time was my biggest fear. She told me to go back and ask again.

I did, and he again refused. He assured me he believed I had the symptoms, he did not think I was imagining them (so he told me to my face but I wonder if perhaps behind my back he did think I was), however the symptoms were of no concern. Maybe to him they were not, but they sure were to me. Finally he sent me to an internal medicine specialist, I found out in hindsight he wrote a letter to my family physician saying I was just depressed. By this time, he was right, I was becoming depressed because I knew there was something wrong yet he was making me feel like I didn’t know my own body and what was normal for me to feel.

So, because of what the physiotherapist had said, I sought out a different doctor at a clinic I had never been to. He listened, and then said he’d like to run numerous blood tests before we discussed the possibilities further. A couple lab tests came back positive; he set up a referral for me with a Rheumatologist immediately.

The first appointment with the Rheumatologist was rather brief, he did check my joints, and assured me I did not have Rheumatoid Arthritis, that I had great range of motion and strength, and most importantly no swelling. Most of the rest of the appointment was spent with him asking me questions about my family health history as well as my own. He asked me about my work and home life. I honestly think because I was still doing all my regular activities he dismissed the possibility of anything being seriously wrong. In fact, he said so. He assured me I was perfectly healthy, had nothing to worry about, and by all means I should continue to do all I had been doing. “But”, he said “I will just run a few more highly specialized tests to be sure, but go home and don’t worry, I’m sure they will be fine.”

Two weeks later, he called me and said he needed to see me at his office again, three hours away in the closest city to where I live. This time he did a very thorough examination, starting oddly, I thought at the time, with my mouth. After the physical exam, he told me I had Sjogren’s Syndrome. Both the SS-A and SS-B antibodies were found in my blood along with positive ANA and RF. I definitely had Sjogren’s Syndrome. He explained it was nothing to worry about. I was thrilled. I really did have something wrong with me; I had not been imagining it. He explained Sjogren’s was nothing I really needed to be too concerned about, except staying out of the sun as the SS-A antibodies were linked to sun-sensitivity that could trigger further disease activity. I heeded his advice, was fastidious with the use of sunblock and avoided the sun during peak hours.

Little did I know at the time, he, like many other Rheumatologists did not know much about Sjogren’s. I was excited to have a name for what I had been suffering with, since it was now May 2002, just weeks before my 40th birthday. Approximately ten years had passed since I had begun mentioning the fatigue and pain I had. I remember telling my long time family doctor, “I could go to sleep anywhere, anytime, and sleep and sleep and sleep, all I need to do is lie down.”

Recently the Sjogren’s syndrome Foundation has acknowledged not just dry eye and mouth as “hallmark symptoms”, but fatigue and joint pain as well. May I join numerous other Sjogren’s patients in saying: FINALLY!

In upcoming posts I will explain how the fatigue and joint / muscle pain has affected my life, as well as the best advice a Rheumatologist ever gave me.

To learn more about the diagnosis of Sjogren’s and the 13 types of fatigue experienced click on the following links:

Multiple Tests Required to Diagnose Sjogren’s

13 Types of Fatigue Sjogren’s Patients Experience