The Answer is YOU

On a wet and miserable evening this past Fall, I sat behind the wheel of my car, desperate for warmth and rest after a very long day. I peered irritably through the watery glare of my windshield at the car I’d been forced to follow for the last few blocks. I sighed with impatience.

“Just get out of my way already!”

As I slowed to a stop at the red light, I saw this:

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The license plate had my name on it and it was screaming in all caps:

THE PERSON HOLDING YOU BACK IS YOU.

I quickly grabbed my phone and took a picture of this random piece of Universe wizardry.

Last week, months after this picture was taken, I was brought back to the truth of that moment. I spent four days in a workshop about reconciliation where we were taught that before we can reconcile with others, we must learn to reconcile with ourselves.

Reconcile: An act of reconciling, as when former enemies agree to an amicable truce. (dictionary.com)

Going into the workshop, I wondered if I would be able to reconcile with lupus, this mysterious, invisible invader that I’ve personified into an ever-present, formidable foe. I was quickly reminded that the factual events of our lives (like getting lupus) cannot be changed, but we can change how we react to those events.

At the workshop, they talked about the reactions that we have “practiced” throughout our lives. These reactions have become so instinctual that they start to define who we are, when in fact, they hold us back from being who we truly are. They broke it down into 13 reactions:

  1. “What About Me” Syndrome
  2. Dishonesty
  3. Dread, Worry, and Fear
  4. Critical: Fault Finder
  5. Blaming and Nurturing Resentment
  6. Anger, Rage, Aggression
  7. Intolerance and Impatience
  8. Addiction to Being Right
  9. Have to be in Control – “My Way or the Highway”
  10. Poor Me, Martyr, Victim
  11. Isolate and Withdraw
  12. Explanation
  13. Excuses for Everything – “I can’t do it”

(Credit: Returning to Spirit)

For me, #3 and #11 are my top two recurring reactions, although I can say I’ve done every single one at some point in my life. I also know that my top two reactions have been at the root of all the major flares I’ve had in the last 15 years.

“When we are no longer able to change a situation, we are challenged to change ourselves.” – Victor Frankl

To be clear, I’m not advocating for a pollyanna view of our lupus troubles, only that trying to be self aware of our reactive behaviour is a way to decrease emotional and mental stress, which is a major lupus trigger.

So, in the end, the car turned off and I was able to complete my speedy mission towards warmth and rest. And really, I think that’s what we all want:

A clear path towards something good. 

The last person that should be standing in your way is you.

NOTE: The broader scope of the workshop was about reconciliation with Canada’s Indigenous People. If you are interested, here is a CBC radio segment that addresses self-reconciliation and how it fits into this important issue.

Sick is Not Weak

Shifting sharply away from the mournful, sentimental tone of traditional healthcare campaigns, the SickKids Foundation completely blew me away with their incredibly powerful new video, “VS.

Sick is not weak. Sick is fighting back.

No matter your age or illness, this video reminds us that perspective is everything and that yes, YOU ARE BRAVE. Yes, you are strong as hell and YES, tell whatever you are battling that THIS FIGHT IS ON.

Face Forward Turns 7

Excerpt from Blurry Face & the Impending Victory of the Battle of the Brain:pc1902332Just before my master keeper gently hurried me off to the ER that August Long Weekend, I sat on my couch in my beautiful character apartment with my computer on my lap, changing my profile picture on my facebook page.  I was completely unaware of what would happen next, that I would almost completely disconnect with my working mind and brain and body… and yet, looking back, somehow, some way, I did know.  Mind buzzing, I chose to change my profile pic to one that my master keeper had taken of me climbing the mountain stairs that led to the Seoul Tower in Korea.  I’m blurry because I’m running up the stairs in a silly, fatigued stupor, it’s night, the path is dark and it looks like there is much farther to go.  I wrote a caption underneath, “A journey of a thousand miles begins with a single step.  See you at the top!”  I finish it off with a happy face and changed my facebook status to this: “He who has health, has hope. And he who has hope, has everything.”  I then put on my best pyjamas, wrapped myself in my best shawl, put on my red and blue monkey socks (because they were funny and I knew that everyone would see my socks at the hospital, so why not make everyone smile?) and announced that I was ready to go.  It was like I knew I was going to be in the hospital for a while, that I knew something big was going to happen, that whatever it was it was going to be the biggest challenge yet…

A month and a half later, I started this blog.

Exactly seven years have passed and I am still amazed that somehow, while in the throes of brain inflammation-induced psychosis, I not only knew I was about to face something life altering, but I also knew I would conquer it. Amidst all the suffering, it was a beautiful gift, this access to a powerful, confident inner voice that wanted to be heard.

Writing in this blog has helped transform my perception of who I am, my disease, and the kind of life I want to live. It uncovered this magical online platform for healing and connection. I now know that I needed to share my story in order to fully accept what was happening to me.

Terminology note: If you were wondering about the term “keeper” in my quoted text, I stopped calling my loved ones that a few years ago. I can recruit people to help me accomplish my vision of wellness, but at the end of the day, I am my own keeper. I am the CEO of my health.

To begin Face Forward’s 7th year on a positive note, here are my top 7 wellness victories:

  1. I can sleep lying down! (no more chest tissue inflammation)
  2. I’m down to one medication and it’s NOT chemo or Evil P (prednisone).
  3. My rheumatologist sees me every twelve months vs. every two weeks.
  4. I left my FT job, for a flexible, PT position that allowed me to rest if I needed to.
  5. Five years after I did #4, I left that PT job to pursue my true passion.
  6. I ran two 10 K races – I used to struggle with walking one block.
  7. I haven’t been hospitalized since this blog was started.

It hasn’t all been victories and trust me, there have been times when I’ve felt completely paralyzed with fear and anxiety. In fact, the last few months, I’ve been feeling really disengaged and unmotivated when it comes to my self-care. I am starting to feel the consequences and yet, I am unmoved. I’ve been trying to make sense of it on my own, but after weeks of frustration and negative self-talk, I think I’m going to try to figure it out here – with you. Part of the reason why I continue to write is because I think it’s important to be candid about every part of chronic illness, especially how it effects us mentally. More to come on that later…

For now, I will say happy 7 years to this weird, little blog that was born out of chaos, but remains a steadying reminder of miles traveled and hard won. “The top” is in every step, over and over again, everyday of this lupus life.

Thanks for travelling with me. I’m glad you’re here.

Constant P Revelation

When I think of all the medications I’ve taken over the last 15 years, I imagine every pill and IV drip stacked on top of each other, row upon row of every colour and size like gleaming, sterile fingers rising higher with every dose. I like to speculate that it would fill a small room, one that I could peer into, then say to my body with mixed awe and concern, “damn, girl, you took ALL THAT and you’re still here?”

I don’t actually think there would be enough to fill a room, but it feels like that sometimes.  I’m sure my liver would agree.

Plaquenil, my ever “Constant P,” was the first medication prescribed to me in 2001, and if I’ve done my math correctly, I’ve taken approximately 10, 950 doses. Also called hydroxychloroquine, this anti-malarial is used in lupus patients for long-term care. According to Molly’s Fund:

Anti-malarials are a sort of “lupus life insurance,” a disease modifier that  decreases pain and swelling, and prevents joint damage and disability. Studies have shown that patients on anti-malarials live longer than those who are not.

Some of the side effects are also lupus symptoms, so I’ve never been 100% sure if I’ve had any.  A few months ago, I noticed the pigmentation of some of my toe/ finger nails had changed. A nail bed would have one or two long, black, vertical lines.

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I looked it up and was disturbed to discover that this type of nail discolouration can be an indicator of skin cancer. I went to the walk-in immediately, and was referred to a dermatologist. To my relief, she concluded that I have longitudinal melonychia, which can be physiologic due to darker skin, or due to prolonged use of Plaquenil. She explained that my lines were light black and did not run into the skin, and therefore, not a sign of cancer. If the lines are solid black and continue into the skin, then there is reason for concern. Since I have darker skin, I’m not entirely sure if the pigmentation was due to Plaquenil, but I knew I had to spread the word that it could be in others. So, to all you long-term “Constant P” users, keep an eye on your fingers and toes! Plaquenil induced longitudinal melonychia is harmless, but it’s good to be aware of medication induced changes to your body. It’s definitely something you should bring up to your rheumatologist at your next appointment and if you think it may be cancer related, visit your GP right away.

And lastly, if you haven’t checked them out already, here are two of my articles now available for viewing on the New Life Outlook – Lupus site. I have an article due next week on pain management options, so I’m excited to share that with you soon!

  1. How to Combat Morning Lupus Stiffness – Combating morning lupus stiffness is a proactive battle that happens throughout the day, not just in the morning. Take these steps to fight stiffness today.
  2. Staying Positive with Lupus – It’s normal to be frustrated with your condition, but staying positive with lupus is important for both our mental and physical health.