Sjogren’s

5, 4, 3, 2, 1, lift off…..I was too tired to start at 10.

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The past week has been a struggle for me energy wise, even more so than most. It is never a surprise when I get a plummet. Like many who suffer with Sjogren’s or other connective tissue diseases, my energy can wax and wane somewhat from day to day. The fatigue overall is relentless.

Even within a day, I may start off strong only to wither away by lunch. Likewise, I could be in my housecoat until brunch barely moving; then pick up speed throughout the day, finishing strong at 10 p.m.

On the “good days” I tend to “over do”, resulting in subsequent days trying to restore and rejuvenate my aching body, my tired mind. Most of the time my life feels like the cliché: “one step forward, two steps backward”.

Learning where the fine line is between not enough and too much is a constant battle for me. I’m the Goldilocks of activity.

Today this quote came up on my Facebook page as a memory from nine years ago:

“You can’t get much done in life if you only work on the days you feel good.” ~ Jerry West.

Well, that explains a few things.

I never feel good, I just feel less bad. I cannot even remember the last time I woke up in the morning, and popped out of bed thinking I was James Brown “I feel good. I knew that I would!”

In general, humans believe the people who are successful are so because they motivate themselves and give life their best regardless of how they feel. To be successful, people must persevere. I do not dispute that whatsoever.

It is also common belief if someone isn’t working hard, or “up to their potential”, they must certainly be “lazy”, or the more polite term “unmotivated”.

If there is one thing having the several autoimmune diseases I’ve been diagnosed with has taught me, it is not to judge other people. If someone isn’t able to take care of business, getting stuff done, I am more than willing to give them the benefit of the doubt. There must be a good reason for their ineffectiveness, or lower productivity. However, I have immense difficulty not judging myself.

Acceptance of my finite amount of energy is difficult for me. I’ve always been a planner, a dreamer, and a doer. When you have high expectations of yourself, it makes sense your lack of ability to follow through would leave you feeling less than adequate.

So, what does keep me slogging along, getting as much done as possible despite my exhaustion?

The answer came today. Not as a revelation, but a reminder.

I saw an email ad for a seminar with life coach Mary Morrissey, in it she said even for a fully fueled rocket to be launched into space, it requires a booster rocket. She believes people are like that too. Even though we may be ready to launch, we still require a booster rocket too.

Thank you to my booster rockets – the people who don’t blow sunshine up my butt saying I can do anything, but who encourage me to do the best I can with what I have on any given day. Who knows? Someday I might really take off.

#writeforyourlife

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While presenting a workshop I attended this week via Pandemic University, Michael Lista suggested people know they want to write, or what they want to write, long before they know the why.
Being a naturally introspective sort, I have been contemplating my “why?” ever since.

Then today I came across a fellow Sjogren’s friend’s post online saying she is going to be returning to writing her blog this weekend. Her comment to friends and family was “It’s scary”. This was my response to her:

“Being scared means you are vulnerable, being vulnerable means you are authentic, being authentic means you got real with your words, and that is what people relate to the very most. It’s all good.”

Today as I thought about why I write, I drilled down to be more specific, thinking about why I write about personal health issues. The personal health topic brings me the most fear when writing, but probably not for the reasons you might guess. What scares me the most is that people might think I am doing it for attention or sympathy. I fear people thinking I am being dramatic regarding events that happened. Trust me, truth IS stranger than fiction; I do not need to embellish a word.

So what do I want?

Why write health stories to post publicly?

One is a selfish reason, the other altruistic.

First, the selfish reason. I have zero desire for sympathy. However, I do crave understanding for my particular situation. I want people to understand my strange constellation of autoimmune connective tissue illnesses, the myriad of symptoms that combine to make every day a new adventure.

The second reason is to educate others, in the hope of preventing them, or someone they love, from suffering needlessly as they wade through the murky bog that diagnosis, treatment, and living with a chronic health issue of any type can be. I want to spare people needless anxiety, especially if they are in the middle of a health misdiagnosis fiasco.

So that is the why of writing about my medical issues. But what about my other writing – the word balm poems, the “bite-size” childhood memoir, the Mr. Wanton stories, the fiction and other memoir not yet published on my blog or elsewhere, but still buried in notebooks between other journal writing?

When I was a young girl, I remember playing games like tag, or Blind Man’s Bluff, running to breathlessness, being chased, kids hollering “run for your life!” I ran to be “safe”.

Now, “I write for my life”.

That said, Michael Lista also told the class this week: “Never trust a writer who thinks they’ve figured it out.”

 

Links that may be of interest:

Friend, fellow Sjogren’s patient, writer Christine Molloy’s blog “Thoughts and Ramblings on Life, Love and Health”. http://www.christinemolloy.com

Writer Michael Lista’s webpage. http://www.michaellista.com

Pandemic University, a totally fake university with excellent 90 minute live and archived writing sessions presented by experts in the field. http://www.pandemicuniversity.com

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

/ wantonwordflirt / 9 Comments

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

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

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

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

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

Click on chart to enlarge:

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

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

/ wantonwordflirt / 5 Comments

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):

More awareness is never a bad thing.

/ wantonwordflirt / 10 Comments

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.

the two “P” words….

/ wantonwordflirt / 12 Comments

Can you think of two words that start with “p” and fit together perfectly?

And no, all you innately sexual creatures, once again, I am not thinking of “that”. Remember, I told you before, this is not the place for sexually wanton writing, yet somehow ever since I said that, innuendo continues to appear.

The two seldom verbalized or admitted, but often practiced words, are the reason I have been away from my blog the last seventeen days. Of course I’m referring to procrastination and perfectionism. Usually when I am away from my blog for awhile it is because of one or the other, or both.

Recently I wrote a 2500 word short story for a timed international writing contest, NYC Midnight. One of my Underground Writing Cohort friends had tempted me to give it a whirl. I had a week to complete and submit the story after being assigned a genre, character, and a specific subject to be included.

Thanks to doing the story for the contest I became more self-aware. I discovered I can procrastinate perfectly. I never considered myself a perfectionist before. I now realized I was obviously wrong.

To be fair, the first three days I did have a migraine headache. Apparently people who have Sjogren’s are also prone to migraines at a more frequent rate than other migraine sufferers; hooray for us. Mine start by feeling like a vague sinus headache then build up to full frontal facial pain for three days. Needless to say pain encompassing my entire face is not conducive to my creative pursuits. So, right off the get go I was down to four days.

While I wasn’t sitting at my computer typing out my story I WAS doing what I do best – writing the story in my head. I told Mr. Wanton it would be extremely helpful to me if he, of technological expertise and mechanical invention, could possibly come up with something that could transcribe my thoughts automatically into a word document on my computer. You know, like verbal word transcription, but for my thoughts. He said “that is a bad, bad, idea.” What does he know? Oh yah, I usually tell him what I am thinking. Perhaps his opinion is of value in this instance.

Upon the end of the headache I should have been ready to type up my story, right? Wrong. For the next few days I proceeded to attack my long lost to-do list with a vengeance – the one that sits permanently on my desk, with items dating back to 1999, not all of which are crossed off yet.

Wow – more self-awareness – if I wanted to finally accomplish my least appealing tasks, the long overdue “leftovers” on my to-do list, all I had to do is commit myself to something I wanted to do even less, in this case the short story.

Perfect. I could put off the short story writing, not feeling guilty whatsoever, because I was getting lots of other stuff done. You know, important stuff – like organize my panties and socks, look up random symptoms via Google, watch Adele and Bruno Mars “Careoke” videos on YouTube repeatedly (okay, admittedly that wasn’t on my to-do list but in hindsight it should have been). I accidentally discovered the most seriously underrated motivational technique for overcoming procrastination ever.

So that brings me to this moment. How did I get over my procrastination to write a blog post today? Easy answer, the alternative was the now top priority item on my to-do list – personal income tax. Uh-huh, I definitely found what I can do perfectly every time.

fullsizerender-10

P.S. In case you are curious, I did complete the short story in eight hours on the seventh day, well before the midnight deadline.