Mr. Wanton’s new nickname for me!

Having ordered my groceries on-line, I was waiting for the call to go pick them up curbside. No pre-set pick up times out here in the boonies; you go get the groceries immediately when they call.

While I was waiting at home for Sobey’s to call, my three year old grandson called to FaceTime with me. Sometimes he calls, talks for 30 seconds and is done, but this time he was chatty. After a couple of minutes, the landline phone starting ringing. Call display was showing it was the grocery store, so I picked up while still on FaceTime on my cell phone with Charles.

As I was confirming my credit card number with the Sobey’s clerk, I had a sudden urge to use the washroom. ARGH! Why does everything happen at once? Quickly, I finished my Sobey’s business, then told Charles I must end my FaceTime call, so I could go to the bathroom. Charles protested,”No, Baba I want to talk to you.”

“Talk to you later! Love you!” I hung up, feeling like the worst grandma ever!

I had on my “dog pants”; the pants I usually wear at home so when our Labrador Retriever slobbers on me it won’t matter. I grabbed clean yoga capris, pulling them on quickly, as I dashed out to my vehicle.

Mission accomplished, I returned home to spend the next four hours washing everything from the store, putting it away, then making our supper, and finally doing dishes. After supper, Mr. Wanton and I were relaxing, watching TV. I looked down at my legs elevated in the recliner.

“OH MY GOD, my pants are inside-out!”

With no emotion, Mr, Wanton replied, “So? It’s just us here in the house, who cares? It doesn’t matter.”

I jumped out of the recliner like it was an ejection seat.

“I wore these pants uptown!” I shouted.

I spun my body around so my backside was towards Mr. Wanton.

“Can you see the tag? Is there a tag hanging on my butt crack?”

“I can’t see your butt at all; your shirt is so long.”

I tugged my shirt up.

“What about now?”

“Oh yah, I can see the imprint of the brand and size, but the pants have no tag.”

Now, I was laughing, realizing unless someone was close to me they would not see the seams of my pants on the side of my legs. Whew.

I actually had inside-out pants on for the last six hours and didn’t even notice. I asked Mr. Wanton if he thought me going to town in inside-out pants was a sign of being too relaxed, or too stressed? He diplomatically “pleaded the fifth”.

A few days later, it was my birthday. For the first time ever in his life, Mr. Wanton baked a cake.

My parents, my son, and his girlfriend came for an outdoor visit. Mr. Wanton was in and out of the house as he checked on his cake project. My Mom asked him what kind of cake he was making.

“Square“, he said with a smart-ass grin.

“No, it isn’t, it’s a rectangle. Two sides are long. ” I laughed.

“Square, rectangle, same thing.”

I said, “If that cake is a square, then I am hourglass shape!”

“What shape do you think you are?” he asked.

“Rectangle! Just like the cake! A vertical rectangle, with arms and legs, and a head sticking out.”

“Like SpongeBob SquarePants?” he asked.

“Exactly! Except I have a head on top!”

The cake and the birthday visit were both a success.

That night as I collapsed into bed, a voice came out of the dark.

“Goodnight Sponge Baba Inside-out Pants!”

Mr. Wanton’s Wild Ride

Mr. Wanton’s transplant medications make him prone to skin cancer, so for Father’s Day I bought him a SPF 50+ hat. I ordered it from Coolibar.* The package from the USA took over a month to arrive. Yesterday, he wore his hat for the first time.

Headed out to mow the grass, Mr. Wanton had on long pants, a sun protective hoodie, and his new hat. He also had on his “PPE” – a facemask and goggles – not because of any danger but because he has seasonal allergies. He is allergic to every type of vegetation in our rural yard, except spruce. Finally geared up, off he went.

While he was mowing, I was inside vacuuming. I noticed the ride-on lawnmower parked in the shade outside the living room and he was kneeling down doing something beside it. I was unconcerned as he occasionally tunes up the mower mid-job.

About 20 minutes later, he stepped into the house holding up a long, dirty, ripped, and torn rag. I was confused. Why was he showing me the rag he was using while repairing the mower?

“I ran over my hat.”

“THAT’S your hat? Your brand new hat?” I knew the answer but asked anyway, not wanting to believe it.

I started to laugh uncontrollably. I could barely breathe. I managed to gasp, “How?”

“My goggles fogged up because of the heat (31C). I couldn’t see where I was going. I got too close to the edge of the yard. I thought I was going over the 150 foot bank, so I quickly put the mower in reverse. Then I backed into some branches, my hat came off, I ran over it, getting it tangled in the blade. Apparently you can be wearing too much PPE, and be unsafe.”

He smiled; sort of.

Then I remembered how much I paid for the hat. Seventy dollars $US. I picked out that hat specifically because it had the widest brim as well as a cord you could cinch up. If Mr. Wanton was in the boat zipping around the lake and his hat flew off, it would not get blown away. Even though I was still laughing, my eyes welled up with tears at the thought of how much I had spent.

“Don’t order me another hat.”

“Don’t worry, I definitely won’t. You will be getting a $5.00 sombrero from the bargain store instead!”

Mr. Wanton located his old hat in the closet; slapped it on his head. He went out to finish the yard. I finally got control of my convulsive laughter, but one glance at the de-constructed hat on the floor and I started all over again.

Coolibar has lifetime fabric warranty. It might be worth sending the hat back, just to imagine the face of the customer service representative pulling it out of the package…and to anticipate the reply we might receive in return.

*Note: I have no financial interest in the Coolibar sun protection clothing company. I have purchased numerous cotton/bamboo jackets from them over the last decade.  I love my Coolibar hoodies.

Mr. Wanton had a change of heart!

Nearly nine months ago Mr. Wanton, my husband, had a heart transplant. Because of his blood type (A+), he was fortunate to have a relatively short wait on the transplant list. A new heart became available to him less than six months after being placed on the list. Some wait years. Some run out of time.

Of course a heart comes from a deceased donor, unlike some instances when a kidney or a partial liver comes from a living donor. We all have only one heart, no spare parts to share. His heart came from someone who was clinically brain-dead but still had healthy organs. The person’s brain was functionally deceased, which is most often due to some sort of accident such as motor-vehicle incident, or perhaps a drug overdose. The donor organ often comes from a young, otherwise healthy person. We do not know anything about his donor. We may never receive any information about them.

There are no words to describe the depth of gratitude we have for the person who gave my husband the gift of their heart, or their grieving family who ultimately made the final decision for their loved one’s organs to be donated. “Thank you” is just so small.

Though Mr. Wanton was not on the list long, his journey to get there was not an expedient one. He was first diagnosed with heart failure due to a suspected viral cardiomyopathy as a result of a typical seasonal flu virus seven years prior. Then for two years before his transplant he was being kept alive by a mechanical heart pump – an LVAD, which is portable life support often referred to as a “bridge to transplant”. Mr. Wanton was plugged into the wall at night by an electrical cord I called “his leash”. He carried rechargeable batteries the size of VHS tapes on his body during the day to keep the pump flowing, his heart going.

Understandably my focus was on Mr. Wanton for the last few years. He has recovered well. It is now time for us to return to regularly scheduled life. It is time for me, to return to me.

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

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

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

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

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

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

Click on chart to enlarge:

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

sometimes all you can do is walk, read a poem

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!

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

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.

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.

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…

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.