sometimes all you can do is walk, read a poem

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For several years I have been submitting a poem, or two, to the annual Friends of the
University of Alberta Hospital poetry contest. The poems are to focus on “hope,
healing, and the hospital experience”. Medical staff, patients, and visitors are
all invited to submit. The selected poems are on display for one year on the
“Poetry Walk” wall on the second floor. The “Poetry Walk” is across from the pedway
to the Kidney Clinic, or straight down the long hall from Diagnostic Imaging or
Dentistry, should you be local to Edmonton, Alberta and some day wish to read the
chosen poems. Though to be honest, I hope you never have occasion to be at the
hospital.

CLICK on photos to enlarge / read.

This year, for the second time, I have one of my poems chosen to be displayed on
the “Poetry Walk” wall. The poems are selected by a panel including hospital staff
and the head of the “Artists on the Ward” program”. The “Artists on the Ward”
program” is dear to my heart. I believe the program staff and volunteers do work
that may be more healing to many patients than any prescription medication or
procedure. A patient may request a visit from an artist to write poetry or stories
together, paint and sketch, or perhaps create or listen to live music.

I discovered the “Poetry Walk” by chance in 2012, when my husband was first a heart
failure inpatient at the Mazankowski Alberta Heart Institute, attached to the U of A
hospital. I needed time away from him to collect my thoughts, so I set off on a
walking meditation. As I wandered throughout the hospital, I happened upon the
poetry. I recall reading a poem about a woman who sat vigil by her spouse’s bedside,
knitting. I continued reading the poems. I felt my breath deepening, shoulders and
neck relaxing, mind clearing, as I continued down the row of frames.

In January 2018, my husband returned to the hospital via ambulance, becoming an
inpatient once again. The dilated cardiomyopathy (believed to be viral in cause) now
had him in end-stage heart failure, too ill to wait for transplant. Mechanical
circulatory support via an LVAD to pump for his damaged left ventricle became the
only option to prolong and improve his life. It is not a cure. It is 24 hour, 7 day a
week portable life support; but it is life. He was an inpatient for five weeks.
Again, at times I needed to wander the lengthy halls alone, to find comfort in reading
words on the wall when I could not write my own.

On February 14th, 2018 my husband was to be sent for an echocardiogram. The unit
staff was busy, so I asked to take him in the wheelchair for his echo by myself.
Allowed to remain with him during the ultrasound of his heart, I watched the screen.
I was struck by the realization of what day it was on the calendar, as well as what
I was observing.

Almost one year later on January 31, 2019 I wrote “On Valentine’s Day” which will
be on the “Poetry Wall” until 2020. It was my Valentine to Mr. Wanton this year:

Is it the best poem I’ve ever written? It is not. I don’t like that the poem is
“telling”; I should be “showing” (my writer friends know exactly what I mean).
But poetry is subjective – people like what they like – and for whatever reason, this
year the jury selected it. Though the poem is far from my “best”, I hope it might
bring comfort some day, in some way, to some other wanderer.

In honor of World Sjogren’s Day, allow me to say: I’m really f***ing tired!

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Today is World Sjogren’s Day. Set aside to honor the birthday of Dr. Henrik Sjogren, who discovered Sjogren’s Syndrome, it is also a day to recognize the millions of Sjogren’s patients worldwide and create awareness of the often misdiagnosed / under diagnosed autoimmune connective tissue disease.

The main triad of symptoms that plague those, including myself, with Sjogren’s are: dryness, joint / muscle pain, and fatigue. The fatigue of Sjogren’s has been studied and found to equal that of MS.

A few months ago I attended a session with a motivational speaker who is promoting a book she authored detailing her personal experiences with low self-esteem, self-shaming, body image insecurity, and infertility. If all that was not enough, she also has a rare autoimmune disease affecting her lungs which required hospitalization in the past. The young mother is a passionate, energetic firecracker devoted to spreading her message of self-love and acceptance to women everywhere. She wants women to “embrace their flaws, own their awesome, breathe fire, and be world changers”.

As I sat listening to her impassioned message I was in awe of her enthusiasm. She speaks her truth unapologetically. After we applauded her, she opened the floor to questions or comments. I told her I thought she was delivering a powerful, needed message but personally I was just “too tired to be a world-changer”.

Her response to me was surprising. “Are you are hiding behind the mask of fatigue?”

What I wanted to say in that moment was “No, I am just truly f***ing tired.”

I wanted to tell her that my fatigue was no more a mask than her infertility was. It is not a choice. It is not something I can turn on and off, I don’t use it as an excuse, rather it is a truth. I did not share those thoughts aloud. I was also having the overwhelming thought that perhaps expecting all women to be world-changers might leave some feeling yet again “not enough”.

I sat there as she continued answering audience questions, stewing over my own thoughts and insecurities. Why was I reacting so strongly to her question? Was it because I was hiding behind a mask of fatigue; did being exhausted gave me any sort of personal pay-off, gains of attention, anything positive in any way? I believe the answer was, and is, no.

(Well, okay, it does give me something to blog about, but that’s all.)

In April I had to have a “level one sleep study”, the kind you have as an inpatient spending the night in a sleep lab hooked up to wires, sensors, recorders, and so on. Literally the sleep technician covers you from head to foot with equipment monitoring your pulmonary, cardiac, and neurological functions as you sleep. Decked out in all the medical technology paraphernalia I wondered how I could possibly sleep.


(Partially rigged up for the sleep study, more stuff to to be added, including in nostrils!)

Adding to the ambience, the room was seemingly airless except for the fan whirring in the corner. The bed was a typical hospital bed complete with vinyl mattress cover and pancake flat plastic covered pillow. Adding to the whole experience is the reminder that upon entering your room you stripped all your clothes off, except your underwear, to be enclosed in Rubbermaid containers as there had been previous bedbug infestations in the lab. And, if all of the above was not enough reason to provoke sleeplessness, the ceiling mounted camera capturing your every moment throughout the night becomes activated, the red “on” light glowing intrusively. The technician shortly thereafter announcing over a speaker in your room: “the study has begun”.

I wondered how valid these sleep studies could be; was it possible people actual slept under these conditions? As always, I was tired. I closed my eyes and hoped for the best. I did not want to have to do this again, ever.

Last week, I finally had the appointment to review the sleep study results with the pulmonary specialist who ordered the test. Good news was I do not have sleep apnea, which had been his main concern, thinking perhaps it was provoking my random intermittent episodes of atrial fibrillation heart arrhythmia.

I asked if there were any other significant findings. He said it was all quite normal, or in medical terms “unremarkable” except for one thing -I had slept 94% of the time.
Highly unusual he explained, for anyone to sleep that percentage of the time during a sleep lab study.

“You must have been extremely sleep deprived before the study”, he pronounced. It was a statement, not a question.

I’ve been tired since 1990. I could sleep anywhere, anytime is what I always tell people. Now I have the study to prove it.

 

 

For those who would like to know more about Fatigue and Sjogren’s: http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-types-of-sjogren-s-fatigue

 

My 3 all-time favourite memes re: fatigue (one of my least fave things) and sleep (one of my all-time fave things):

A bite-size piece of memoir for Mother’s Day

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Dad served on the town recreation board for years when I was a kid. I was thrilled. Was I already civic minded? Was I proud of him being involved in community volunteer service? No, these were not the reasons.

Once a month, the “rec board” gathered for a supper meeting in town hall. Lucky for me, the perks of being an only child kicked in.

Mom took me out for Chinese food at the “Golden Dragon” every time Dad was attending the meeting. The front of the restaurant was a regular small-town cafe, but passing through the beaded curtain at the back, you entered the enchanting dining room. Dim light, Chinese lanterns, white fabric table cloths, stemmed water glasses, leather-bound menus, and wooden chopsticks waited. Mom and I regularly had arguments at home but once a month, over wonton soup, egg rolls, and Cantonese chow mein, we called a truce.

****************************************************************************************
P.S. Happy Mother’s Day Mom! This one’s for you:

*****************************************************************************************

“Bite-size memoir” is a chunk of memoir just 150 words long, no more and no less.

It was first initiated several years ago by Lisa Reiter on her blog: https://sharingthestoryblog.wordpress.com/

If you enjoy writing but haven’t the time to get into a bigger project, or you are just starting to write, give it a whirl.

150 words may not seem like much, but have another read of the memoir above. Think about how much you learned about me, and my family,
in one little “bite”.

More awareness is never a bad thing.

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Today is World Lupus Awareness Day. I sometimes wonder if the proliferation of awareness days, weeks and months desensitize us, making us immune (no pun intended) to the message we are intended to receive.

While visiting last weekend, my mother saw tv sports commentators wearing green ribbons. She asked why they were wearing green ribbons? I replied for the Humboldt Bronchos hockey team. She knew that had been done, but was surprised they were still wearing those weeks after the accident. Having celiac disease, she commented that green ribbons are also worn for celiac awareness. I added my two cents: green is also for organ transplant awareness too. We are running out of colors, sadly not out of diseases or causes.

Since starting my blog, I’ve had the same thought while composing every post about Sjogren’s’s Syndrome – everyone who reads my blog knows about this already. But thanks to the world wide web, new readers continue to find me here and inevitably after each post a new reader e-mails me, or leaves a comment after a post saying they never heard of Sjogren’s before. Sometimes people thank me, because they have Sjogren’s themselves, or know someone who has it, or suspect that someone they know and love is suffering the symptoms but has yet been diagnosed. I am willing to gamble on reader fatigue if it means one more person in the world will become aware.

Beyond awareness, I hope my writing will also generate understanding. Awareness that a certain disease or cause exists is absolutely the first step. It is great to know today all over the world people will wear purple ribbons acknowledging it is World Lupus Day. I hope people ask the person wearing a ribbon why they are doing so; that they get a response creating an understanding of Lupus and its impact on the person wearing it, whether they are afflicted or wearing the ribbon for someone they know.

Several years ago my Rheumatologist believed I had Lupus, but as my symptoms evolved and blood tests were repeated over and over through the years, I was diagnosed with Sjogren’s Syndrome, Raynaud’s Syndrome, Autoimmune Hepatitis, and Undifferentiated Connective Tissue Disease (UCTD) “with multiple symptoms of Lupus and Dermatomyositis” instead.

LUPUS overlap diseases

Although I meet the criteria for Lupus based on the characteristics used for diagnosis, because it has not affected my brain, lungs, heart or kidneys, and I have not tested positive for the definitive antibodies anti-DNA, rather only the more general ANA, my current Rheumatologist does not want to say I have Lupus. Instead I was diagnosed with UCTD, which is basically a catch-all disease category (hence the word undifferentiated) for people with symptoms of several connective tissue autoimmune diseases including Lupus.

To do my part on World Lupus Awareness Day here are the diagnostic criteria for Lupus as per the Canadian and American Rheumatology and Lupus Associations. A person must have at least four of the eleven criteria on the list. If you currently have four or more of these, or have had in the past, there is a strong chance you have Lupus.

1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7. Kidney disorder – persistent protein or cellular casts in the urine
8. Neurological disorder – seizures or psychosis
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA)

(In case you are curious, # 1, 3, 4, 6, 9, and 11 have applied to me. Because I am currently taking a chemotherapy immune-suppressant drug for the AI Hepatitis, most of those symptoms have been lessened by the same drug, which is a very good thing.)

Remember if you see someone wearing a purple ribbon today, maybe take a moment to acknowledge it. Be aware and even better, try to understand the complexity of Lupus.
It is not an easy disease to diagnose; it is just as difficult to live with. Be patient, be kind.

Bad news: we are all dying. Good news: we can still laugh.

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We are all going to die. Some of us know when it will happen and some of us do not.

The doctor called with bad news today. The first thing I thought after gently setting the phone down on my desk was should I still order those new sandals on-line?

Summer weather is almost over where I live. I won’t have much time to wear them before the snowflakes fall. My husband is always astonished at how far I push the flip-flop season. As long as there has been no snowfall sticking to the sidewalks and grass I am likely to still slip on my flippies to at least go out in the yard, if not to town.

I wonder if it is worth spending money on something that I might not be around to wear next summer. I suspect this is a weird worry to have; maybe not, who knows? But the sandal concern reminds me of the other day in the car on the way to my doctor’s appointment the underwire in my most loved silver grey bra poked through. Oddly both sides simultaneously peeking up and out of the top of my tank top like two white antennae of some creature living nestled down between my boobs.

bra betrayal

As Mr. Wanton drove down the highway attentively I kept poking the wires back into place, but with the slightest movement of my body, out they would inch again.
“Screw it!” I said, and yanked them out completely.

Mr. Wanton, concentrating on driving as we entered the town limits, was unaware of my struggle until then. He glanced over at me but said nothing.

I held the two large “U” shaped white plastic coated wires up near the rear view mirror so Mr. Wanton could see them. Holding them in one hand, I twirled them around between my pointer finger and thumb.

“I think I could make something out of these. Like, maybe a mobile; see how easily they twirl. Wow, I sound like my Dad.”

I laughed.

Mr. Wanton said, “Yah, you do sound just like your Dad. Maybe give them to him to put in his garage.”

Now we both laughed.

I agreed. “Yah, Dad could add them to his collection of stuff he might need some day.” I took a long deep breath and sighed. “I guess I am going to the clinic floppy today.” I was somewhat confident the doctor might see worse things during his day than me hanging low.

Mr. Wanton, eyes on the road, was oblivious to my level of distress.

I’m sure no one will notice.” he said.

As we continued down the road I remember saying: “I guess I will need a new bra”.

And now I wonder, will I?

And that’s the thing when you get seriously bad medical news with no specific deadline, just vague inclination of impending doom…do you buy the one season shoes?

I didn’t buy the sandals, but I have splurged on a fabulous, lacy, deep raspberry fuchsia pink underwire bra made in France. I hope I get to wear it until the fabric is worn thin and the wire antennae poke up from my cleavage once again.

P.S. Since I posted this, people I love (and who obviously love me) have been sending me messages of concern. No need. I have no idea what is going on medically really, no specifics yet, other than the docs are concerned because I have connective tissue diseases and some preliminary testing points to those illnesses now affecting my heart and lungs. With miracles of modern medicine I hope to be out in the grass in my barefeet and flippies next season, and several to come! 

But seriously folks, no guarantees in life except it will end. What sparked this post is that I was thinking how I much rather it would be later, than sooner.

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

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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.

Selective memory from high in the sky…

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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.

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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

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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.