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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8 Years Later: Why I’m Still Here

8th Blogoversary

So much has changed since I started this blog, but what remains is my belief that this matters. My voice, your voice, researchers, physicians, caregivers – we all need to be part of this conversation. Our stories connect us, unite us, and bring us closer to understanding illness and how to live with it.

It seems appropriate that today, on the 8th “blogoversary” of Face Forward, I would stumble on an article that implied false information about the treatment and curability of lupus. It reminded me of why I want to be here, why I will continue to try and find a way to fit blogging and patient advocacy into my life. It’s hard to be consistent, to be here as much as I want to be, but I want to try. I want to keep myself in the conversation, to find other voices, to turn up the volume. 

It’s not just about building awareness to support research towards finding a cure. It’s also about creating a community that goes beyond your specific illness. There is a common language and wisdom in our journeys that can inspire and empower. I am honoured that I’ve been approached by patient advocates of all kinds and I plan on continuing to share the work that they do.

My story here on Face Forward began when cancer survivor, Lisa Ray, started telling hers. Storytelling is contagious and it’s the one thing that shouldn’t be cured.

 

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!

 

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.

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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.