I am a Lupus Warrior!

I am Ky Malupa.

I have Systemic Lupus Erythematosus.

I AM A LUPUS WARRIOR. 

IMG_1174 no rashes lighting changed FLIPPED

 

I have had lupus (click here to know more about lupus) for 7 years now and the first few years were hard. My husband and I had to battle through a lot. Just like any patient receiving news that they were diagnosed with a lifelong disease, I was shocked and devastated. I wanted to pretend that nothing would change, that I was still normal. Days and months of denial passed until one day, I woke up and realized, “Who wants to be normal anyway, normal is boring.”

I have my own set of lupus battle scars. My antibodies attacked our 1st daughter’s heart while she was in my tummy, she passed away 11 days after a full term delivery and a pacemaker operation (click here for Caitlin’s story). I had a miscarriage 2 years ago (click here for Mary’s story), which was, as emotionally painful as our first loss. Losing one child after another does not get any easier, it  gets harder and harder to cope and to accept reality.

I have gone through countless medical ordeals. Dealt with the drama and consequences of undesirable blood test results. I’ve been loaded up with steroids and other drugs. There are days when my body just gives up and I can barely stand. 

Some things I cannot control and I just have to give in and let my body rest.  Some things I can control. Some things I control.

We started waging a war against food last year. Yep, you read it right. Food. The unnecessary kind. We started using ingredients at their simplest form, we started a “clean eating” lifestyle.

My husband researches a lot about lupus, and on countless occasions, he comes across blog posts and articles of lupus patients giving up gluten and feeling so much better (click here to see my blog post about gluten). Around May last year, after a lot of prodding and nudging from Marco, I finally gave in and we both gave up gluten, for good.

Gluten was just the first step. Once we took it out of our diet, I felt better. But the war against the “unnecessary” had just started. Once gluten was out, my body became sensitive to other unnatural food choices. I started getting rashes on my face every time I would eat dairy. So I bid dairy adieu.  Eventually, we had to give up other food items that included high fructose corn syrup, corn, emulsifiers, stabilizers, MSG, trans-fats, GMOs, artificial colors and sweeteners, and anything and everything with preservatives.

It wasn’t easy at first but the results have been promising. My blood tests have normalized and are better than ever. My ESR (erythrocyte sedimentation rate), one of the markers that determine if lupus is active, has gone from 91 to 20, and down to 11, within the normal range of 0-20. It has never been consecutively that low in a longggg time. Lupus patients know that this ESR rate is hard to maintain. My lupus indicators are still positive, lupus will never go away, but I have been on remission, and it is not only evident in my blood tests, but also in the way I feel. And about 3 months ago, my rheumatologist took me out of plaquenil. My next goal is a steroid free life!

We don’t diet, we don’t starve ourselves. If you have seen me eat, I eat like a man who just did 8 hours of hard labor construction work. I eat big portions, and I love to snack. We eat right, and we exercise more than 3x a week. I don’t smoke, I rarely ever drink alcohol, I avoid stress and stressful people, and I sleep 6-8 hours every night. I take care of myself, I take care of my body, after all, I only have one.

To sum it all up, we don’t obsess about how much our calorie intake is, or how much food we eat. We are focused on making sure we eat the right stuff whenever we feel like it.

I’m not going to lie and tell you it’s easy. It’s a hard battle. Reading through all the ingredients, coming up with my own recipes, trial and error in the kitchen. One of the hardest things we’ve had to deal with is eating out, because we love to eat out. I only have a handful list of “safe” places to eat at, ordering takes forever, and sometimes, they still get it wrong. How do I know? I get super itchy rashes on my face. Whenever this happens, I feel defeated, that what we’ve been working on failed, once again. I give in and I take anti-histamine for the itchiness, then I have to take steroids for the inflammation. But I am a Lupus Warrior, and no matter how many times I fall down, you can be sure as day that I will rise up and continue on this battle to make myself healthier.

IMG_1155aMakeup by Ron Maclang-Pena

Hair by Ron Maclang-Pena & Kathleen Garcia

Photograph by Christine Day Lorico

Our food lifestyle changes are based on what my husband has read in books and online. Experimentation has played a big part, and these changes have helped me feel better physically with amazing blood test results. Word to all lupus patients, these lifestyle choices have not been approved by any doctor. It is our choice, and it has been one of the best choices we have ever made. 

My question to you is, Do you love yourself? If you do, then why eat unnatural things. After all, you are what you eat. 

May is Lupus Awareness month. Help us as we try to reach more people and spread lupus awareness.

 

 

 

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About Ky Malupa

Housewife. Mother of 2 angels. Gluten free, dairy free, corn free baker and eater. SLE patient. Hair and Makeup Artist. Image Enhancement Instructor.
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5 Responses to I am a Lupus Warrior!

  1. hazel says:

    Hi,thanks for sharing your story. I’m sure it inspired a lot of lupies. Me too, been changing my eating habits a bit. Take away msg as much as possible. No junk foods and sodas. And keep away from preservatives. It may really be hard and tempting but it’s for the good. I’ve been battling the disease for 2 yrs now and so far,my ESR considerably lowered.but it has not gone below 20 yet.hopefully soon.thanks and more power to u!

    • Ky Malupa says:

      Good for you Hazel! I believe that if you think it, it will happen! I’m sure your ESR will plummet down. Let me know when you get that below 20 value 🙂 Thanks for reading my post Hazel! God bless.

  2. lilian bangi says:

    Me too is a lupus warrior i battled for more than 20 years and just like Ky Malupa’s disposition, giving up is a remote possibility.

  3. diane says:

    My esr last month dropped to 13. My only problem now is my urine albumin +… I have been a lupie since jan 2014.

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