Monday Inspiration & Good News!

Need some serious inspirational Monday vibes? Check out Shanelle Gabriel’s video below! I LOVE what this fellow lupus warrior has to say about fear and the unexpected freedom her diagnosis gave her.

I also have an exciting update – Face Forward has been nominated for a WEGO Health Award! Two years ago, FF was nominated for Best Kept Secret and Best in Show. This year, FF has another Best in Show nomination. I have no idea who nominated me – whoever you are – THANK YOU! I am honoured to be considered a “patient leader” and to be counted among so many inspirational individuals who are making a difference in the lives of those with a physical and/or mental illness. Congrats to all the other nominees!

 

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Google Searching Through a Lupus Lens: NLO Chrome Browser Extension Review

Happy Friday, blog fam!

Over almost 8 years of blogging, it’s been exciting to see more online support networks and resources for people living with lupus. That being said, the web can feel like an information jungle, draining and time-consuming to navigate, especially when you’re trying to conserve energy during a flare. What if there was a way to get the lupus-related info you want, all in one place, with little effort?

In early June, New Life Outlook will be launching their new Google Chrome browser extension. As a member of their NLO – Lupus writing team, I was given a special preview, which I will be sharing with you today!

So, what is a browser extension, you ask? Browser extensions extend a web browser with additional features, modify web pages, and integrate a browser with other services. If you’re a visual person like me, your first reaction to reading that was probably, “say what??” Don’t worry, I took screen shots!

New Life Outlook provides support for a spectrum of conditions, so when you set up the extension, you can choose the type of information you want to see featured on your browser page.

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You can also choose specific health news providers:

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When you are done the initial set up, your Google Chrome home page will look like this:

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The home page includes the time, date, temperature and the latest New Life Outlook article recommendation, which happens to be my latest article on lupus stigma!

The left side column is your navigation panel for your browser. When you click the “nlo” circle, it slides open the health news panel:

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You have three tabs to explore: News, articles, and inspiration. You can also “favourite” any articles you want to save for later, change your background pic, etc.

Visually, I think it looks great – it’s simple and clean with lots of personalization options. Right now, they don’t give the option of uploading your own background pic, which I think would be a desirable add-on. I also think it would be great to add blogger posts as a newsfeed tab on their news panel.

That being said, I love what NLO is trying to do with the development of this browser extension! What are your first impressions? Would you try it?

If you are curious, check the chrome web store and NLO’s step-by-step instructional video on how to set up the extension!

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.