I am Ky Malupa and I have Lupus.
I’ve had Lupus ever since 2008, when I was 3 months pregnant with my first child https://kymalupa.com/2013/05/06/my-lupus-story-2/ I’ve never tried to keep it a secret. I’ve always thought in this crazy head of mine, “Why, what for? Lupus doesn’t define me, I dictate what I do in my life, I am in charge!! ME. ME. and ME!”
Or so I thought.. Like everything in life, things aren’t always noir et blanc; sometimes it’s purple! For me anyway.
Today is May 10, 2014, and it’s World Lupus Day. Today I come out into the open baring it all, finally admitting it- Lupus does define my life!
I say this with an exclamation point like it’s a positive statement because it is. Sometimes we get caught up and wrap ourselves with the depressing effects of an illness. It’s understandable. I’ve been there. I was on shopping therapy for a year after my daughter Caitlin passed away. I’ll never forget that year and neither will my husband, or the credit card company! Oh, and FYI, retail therapy did not cure my depression!
It was when I started to accept what is happening to my body, and what happened to my Caitlin that my heart started healing.
My husband started researching about Lupus and its food relation to flare ups. I went to specialized doctors such as Internists, Dermatologists, Immunologists, and Rheumatologists to learn more. Expensive blood tests here and there.
After numerous check-ups and countless nights web surfing, we got it down to the 5 basics and “Kyla’s living well with Lupus life rules” was born.
1. Don’t get stressed.
Hence, my over used, my invalidated reason why I don’t work an 8 hour job. I love this rule! But kidding aside, I am a Type A person. I get pumped up with stress. You can say that I feed off of stress, which is not ideal.
2. Don’t get sick.
I try to avoid infections, your basic cough and cold, bacterial or viral infections. What I’m actually saying here is I try to avoid people who are sick. I also avoid stressful people, negative people, ungrateful people! The list goes on and on!
3. Stay away from the sun.
Lupus patients are photosensitive which means we have abnormal light sensitivity. This has nothing to do with pictures. Selfies are definitely allowed! I have to admit though, staying away from the sun is the hardest one for me. I’m a swimmer, I love the water, I love the beach, I love the sun. I try, and I fail. But I try, you know, and that’s the important thing: I try. Let’s focus on that.
4. Don’t eat dairy products.
This one could be completely unrelated to me having Lupus. But for some bizarre reason, I get rashes on my face when I eat dairy products. The same rashes I get when I am flared up. And as a makeup artist, I am an advocate of having a clear canvas = good skin. It was either gouda or good skin, the latter won. I guess it helps too that my favorite of the 7 deadly sins is pride. Especially in how my skin looks. Not good for my soul, but a good motivation for avoiding dairy.
5. Avoid gluten.
But, but, but… Gluten is sooo darn good! I love pasta. I love bread. I love all these gluten filled amazing yummies, and I want them all in mah tummy! But, I cannot.. Like dairy, the gluten just calls all the rashes to come out and play. I am not 100% off gluten though, I have a cheat meal every now and then, but as long as most of the time I’m off it, I stay rash free.
These 5 things HAVE defined my life. They have changed how I live, and it’s a good thing. The way I see it is that my body does not give me a choice but to be healthy. That’s it. My mantra is simple – Do it or die.
My rules have actually lead up to me living a healthier life. I am forced to follow them to make sure I don’t flare up, and it’s working out pretty well for me. Lists are there to guide us; it’s up to you what you make of them. It doesn’t matter if you have Lupus, or another disease, or you are blessed with awesome health. You only have 1 body. That’s it. ONE. What you do with is is entirely up to you but remember that you will be stuck with it until your last breath so choose wisely.
It all depends on how you perceive things. I choose to see life through my rockin’ Lupus raybans, and it is beautiful!
Cheers to all the inspiring Lupus patients that I know and have yet to meet. We all have our battles but we live to fight another day!
Thank you to Ron Pena, an awesome makeup artist and a dear friend, for inviting me and organizing a Lupus World Day shoot. I love you to the moon and back! And to the talented and patient photographer Patrick Mateo, I don’t know how you got this shot out of me, I salute you!
I am Ky Malupa.
I have Lupus.
I have my battles.
I have my story.
I am living my life!