This is for you

When your appearance changes due to illness/ meds, it’s not about vanity, it’s about loss. Not recognizing yourself in the mirror while struggling to heal and navigate the changes in your life adds another level of stress and anguish. I say this because I’ve experienced it.

I’ve never had cancer, nor do I claim to understand how it feels to live with it. I’ve wanted to donate my hair for a long time, but recent events informed my decision to do it now in honour of loved ones – angels, survivors, and those courageously battling – this is for you.  #8or8

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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!

Face Forward Spotlight: Jessica Kundapur

I’ve met a lot of incredible people since I started this blogging journey in 2009. Their stories not only motivated and inspired me, but their advice and support helped me heal, both in body and mind.

Today marks the beginning of Face Forward’s “spotlight” series, which will feature the lupus heroes and advocates that I’ve met in this strange and wonderful online world. The formula is simple:

1 awesome human + 6 questions

Why? Because sharing our stories is part of how we face forward and thrive. There are 5 million people in the world living with  lupus and we are all connected by our shared experience. We can help each other. We don’t have to feel alone.

I would like to introduce awesome human #1: Jessica Kundapur.

Jessica

Jessica is a passionate advocate for lupus youth around the world and author of Fabulupus: How to be young, successful and fabulous (with lupus). 

How would your closest friends describe you?

My closest friends would describe me as outgoing, bubbly, positive, friendly and fun.

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

 I would tell myself first to take each day at a time and not worry so much about the future. I would tell myself that you can have lupus and achieve most of your goals. Give yourself space and time to heal and be flexible – not everything has to be accomplished at once! BUT you can still ensure that you are always taking steps (even small ones) to realize your potential even though you have lupus. Finally, the last thing I would tell myself is that having lupus can actually give you a sense of freedom – you no longer have to do what others expect from you. You can chart your own course and do things your own way, even if that means taking more time, find different routes and doing the things that only you find truly meaningful and bring you alone happiness.

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

First of all, I would say to make sure you have your own support and that you first take care of yourself. It’s a lot harder to look after someone else if you are mentally exhausted or physical unwell. Make sure that your needs are also being met! Next I would also say to make sure expectations are clear between yourself and the person you are giving care too. If expectations are discussed in advance, you can find ways where the one with lupus can be empowered to do many things on their own while still making sure they get enough rest to allow their bodies to heal from a flare.

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?

First of all, the biggest help for me was actually writing Fabulupus! That was a way where I could chronicle my own journey’s failures – and successes – to help empower others. So writing definitely helped to ease my mental strain of having a chronic illness. Next, I have a wonderfully supportive network including my family (especially my loving husband and a mother who always listens to me when I am unwell) and I have truly exceptional friends (both with lupus with and without) all over the world who give me a lot of encouragement in pursuit of my goals. I also am active about looking after my emotional health by doing calming activities like yoga and going for walks. I urge everyone with lupus to not let their feelings build up, because it can happen, as lupus can be very overwhelming with lots of negative feelings to process. Please talk to someone and get professional help if things become very severe. One of the biggest things I have learned is that there are ways to deal with the emotional strain- you are not alone and there are people who can help.

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

The most positive thing that has arisen out of my lupus journey is that I feel free. I have made many unconventional decisions in my life –including living in different countries (I currently live in the Netherlands), changing careers, writing a book and even how I have planned my family life. But I never feel guilty about my decisions, in fact I feel empowered and fabulous that I am living the life that I want. It seems paradoxical because I have no choice but to manage an illness, yet as a results of the illness, I am free to make decisions that truly put me first. I really don’t care what others expect me to do- I live my life so I can balance my lupus, physical well-being, emotional health with fun adventures.

 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.

I have still so many adventures and places that I want to explore! I have been lucky that I fulfilled one of my biggest dreams: and that was to write the book. My next biggest dream is to travel to Peru and see the Inca ruins of Machu Picchu.

Find out more about the book Jessica co-authored with fellow lupus warrior, Jodie Nimigon-Young at www.fabulupus.com. You can also check out my Fabulupus review here on the blog!

Your story matters! If you want to be featured in Face Forward’s Spotlight Series, email me at elena@lupusfaceforward.