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.

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.

 

Indoor UV Effects (& Light Filter Giveaway!)

When I was working long hours in an office, I would squint suspiciously at the harsh fluorescent lighting above me. According to Molly’s Fund, 40-70% of those with lupus will notice an increase in lupus symptoms or the severity of symptoms after exposure to UV (ultraviolet) rays. This can come from both natural and artificial lighting – like fluorescent bulbs.

These days, I work out of my home, so when Make Great Light offered me an opportunity to try their fluorescent light filters, I didn’t have the right kind of lighting to test it out. Fortunately, thanks to the generosity of Make Great Light, I’m able to offer a special giveaway for one lucky reader to try it for themselves!

Make Great Light‘s fluorescent light filters convert harsh fluorescent light to full spectrum lighting, filter out UV, and eliminate glare. Here is a fun, short video that explains how they work:

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Make Great Light’s Tube Filters

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Make Great Light’s Overlay Panels

So, how does the giveaway work, you ask? Simply comment by clicking the speech bubble at the top of the post and tell me how fluorescent light affects you and where you would use your fluorescent filter if you won it. The winner will be drawn on December 9th, so you have one week to get your comment in. And if you don’t win the draw, Make Great Light happens to be a big supporter of their local lupus foundation chapter and offers a 20%  discount to anyone with lupus!

The giveaway starts now, so get your comments in for an awesome chance to try Make Great Light‘s fluorescent filters for free!

Book Review: Fabulupus – A Must-Read For Young People with Lupus

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Authors Jodie Nimigon-Young and Jessica Kundapur wrote Fabulupus: How to Be Young, Successful, and Fabulous (with Lupus) in response to the lack of resources for young people despite the fact that “most people with lupus are diagnosed with this crazy, unpredictable illness during the craziest, most unpredictable time of their lives.” Amen to that, sisters! My diagnosis came to light not long after I turned twenty and with next to no guidance from my rheumatologist, I thought my life was over. If a book like Fabulupus had fallen into my hands 14 years ago, would my lupus journey have been easier? Reading the book in hindsight sounded like a fascinating task. When Jessica Kundapar contacted me, asking if I would be willing to review the book, I couldn’t say yes fast enough!

So, let’s cut to the chase, shall we? Fabulupus should be in the hands of every newly diagnosed young person with lupus. In fact, their loved ones should be reading it, too, and here’s why:

In their promo material, Jodie and Jessica pose the question: “Can you be a young person with lupus and still be successful and fabulous?” They proclaim a resounding “yes!” and go the extra mile to prove it. Fabulupus leaves no stone unturned, offering personal experiences, detailed examples, and tips on how to manage every aspect of a young person’s life including relationships, self-esteem and style, employment, finances, and spirituality just to name a few.

Fabulupus is inspiring, informative, and thoughtfully written with a supportive and caring voice. Jodie and Jessica are relatable, knowledgeable, and have created a resource that will give young people the tools they need to feel empowered about their self-care. Lost and afraid, I made many mistakes after my diagnosis that led to constant flares and unhappiness. If I had read Fabulupus, I think that much of that suffering could have been avoided. Even as one no longer termed as a “young adult,” there were many aspects of the book that could still apply to my life as I continue to learn how to be successful and fabulous with lupus.

I benefitted greatly from those who offered their unique pearls of lupus wisdom, who showed me that they came out the other side, who gave me hope that I could do the same. Let’s spread the Fabulupus love and support Jodie and Jessica in their mission to help all our young lupies out there! You can check them out on twitter @Fabulupus or at their website www.fabulupus.com.

Have you read an amazing lupus book? Let me know! I can add a Face Forward Virtual Bookshelf page to get all that vital information flowing to the people who need it!