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

(Ultra)Sounds of Silence

“Is your Dad still your next of kin?”  The receptionist runs her fingertips across the frayed edges of my health card.  I look at her blankly.  “…Do you want to change it?”

“No, no. That’s fine.”  The waiting room is littered with dads-to-be, the jackets of their expectant partners sit empty in the chairs beside them.  An older couple sits across from me holding hands.  They look up at me as a white-haired woman shuffles towards the ultrasound technician who has just called her name.  I smile.  I have no dad-to-be, folks.  Just my “next-of-kin-dad,” but he’s not here either.  My cartoon-faced liver is my only companion.

“Take a breath in… ”  I suck in, trying to draw my skin away from the cold gel slathering across my belly. “… And hold it.”  I can hear the ultrasound tech’s fingernails click against two buttons interchangedly, a beep and then a click, two more beeps, one more click.  The flourescent lights from the hallway seep through the top mesh of the pastel curtain drawn across the room.  My organs pose for their close up.  In another lifetime, perhaps I would have been perfectly healthy, with my dad-to-be clutching my hand excitedly as we peered at the blobs on the screen, ooing and aahing and convincing ourselves we could see it’s feet.  Instead, I am alone.  If you ask the older couple in the waiting room what I am thinking, I am sure they would say that I am hoping and praying that Lupus will allow life in my belly one day, but instead I’m wondering if I will allow it.  I don’t know if I would even try if I didn’t think I was healthy enough to give my child the energy and attention he or she deserves.

I feel the curve of the transducer press into my side.  “Breathe.”  I let go.  

I let it go.  

These things will be decided, but not today.  I have to learn how to preserve and live my own life before I can even start thinking about taking care of another.  And even if I were healthy, I would not want to be pregnant right now anyway.  Everything is as it should be.  And besides all that, I know that  becoming a mother doesn’t necessarily involve having anything in your belly at all.

That was on Tuesday.  I won’t get results back from the ultrasound for at least a week or so.  I’m not worried.  I think my cartoon liver is one tough cookie.  I started the Big M the evening of my ultrasound after an entire week of “almost taking it.”  Four tiny, yellow pills finally slipped down my throat.  I climbed into bed, lying perfectly still into the early hours of the morning, listening for my body to sound the alarm.  Thus far, all seems to be well.

And now, we wait… and enjoy the silence.