Face Forward Spotlight: Ruby Castilho

The formula is simple:

Ask an incredible individual that I’ve met through my blog to answer six questions.

Featuring “Fabulupus” co-author,  Jessica Kundapur was an amazing way to launch the Face Forward Spotlight series and I’m equally excited to introduce awesome human #2 – RUBY CASTILHO:

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Ruby, who lives in the UK, was diagnosed with lupus at the young age of 16. Ruby reached out to me in 2015, the year her desire to create awareness and support for others led to the birth of her blog, positivelylupus.

Two years later, Ruby has gone from birthing a blog to expecting her first child! She will be blogging about her pregnancy, aiming to:

“sugar coat as little as possible and just tell you all the truth, as it happens.”

I know there are many women with lupus who will benefit from her insights as she experiences the challenges and joys of the months ahead. For those of you who are meeting her for the first time, let’s put her under the Face Forward Spotlight and get to know her better:

How would your closest friends describe you?

My friends would probably describe me as a quirky, happy go lucky character who looks on the bright side and is happy to help with what I can.

If you could go back in time and speak to your past self right after your lupus diagnosis, what advice would you give yourself?

The only advice I can think of is to make myself more aware of what lupus actually is, as it wasn’t until probably 2 years or more after my diagnosis that I started to understand my condition and body properly.

What is the most important thing you think a caregiver/partner of someone with lupus should know?

A partner of someone with Lupus should first of all know that they are awesome for sticking by them, but also not to be upset or disheartened when there is nothing much they can do to help with the pain. But that by being there by our sides is more than we could ask for. If your partner is stubborn and ditsy like me, the best thing you can help with is helping to spot any changes to their behavior/actions/physical appearance as we may not realise small changes ourselves, however they may be a big clue as to what’s about to come.

The mental and emotional struggles that come with lupus can be as challenging as the physical. Who/what helps you face forward when you’re feeling bogged down by the mental and emotional strain of having lupus?

One thing that helps me is my cats, they never fail to cheer me up. I feel like pets can read your emotions, and also they are just so silly and cute it can’t be helped but to lift your spirits! I think the best thing is just to find something you really enjoy, whether it be playing with your pets, visiting a special location, cooking, etc to help you de-stress.

What is one positive thing that has come out of your lupus journey?

One positive outcome of having lupus is that I have really learned to understand myself and my body, what my body needs and what is best for me. Of course I am still learning, but I feel that I wouldn’t be who I am, as confident as I am about myself if it wasn’t for lupus. I’ve learned to care more about myself, and to cherish the things that actually matter most. Because of this I can be more rash when making decisions and not be too concerned about what other people will think about my decisions, as long as I know that it is what’s best for myself.

Face Forward is described as a meeting place on the journey towards balance, health, and epic adventure. Share something adventurous that you’ve always wanted to do.

One thing I have always wanted to do is to go sky diving, in a beautiful place like Dubai. I love travelling the world and seeing different cities, cultures and cuisines. Seeing all of this from above I think would be incredible!

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I love that we were able to connect despite thousands of miles (and an ocean) between us! Thank you, Ruby, for having the courage to share your story. You can follow Ruby’s journey through her blog, postivelylupus.

Would you like to be featured in Face Forward’s Spotlight series? 

Email: elena@lupusfaceforward.com

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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!

 

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.