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Writer's pictureLeonard Santiago

Life with Lupus and Kidney Disease

Updated: Dec 11, 2021


 

Since high school I was diagnosed with a chronic kidney disease which turnout to be my partner in living a healthy lifestyle even though once in a while I do something medically prohibited. For my 11 years of maintaining myself healthy, below are some of the usual matter I encounter from my journey. Most of the early diagnosed people of the same disease might relate to these or those who are currently taking medications and care. Let me know what’s your story. Have fun reading.

Are you pregnant? How many months you’re pregnant?

You’re young to be pregnant. Gosh, early pregnancy is now a trend.


Funny side when you’re in a laboratory and some of your test is same with the laboratory tests conducted for pregnant women.


Most of the times I will explain no, but there’ll be times that I am tired of explaining and will response, maybe I am? I don’t know.

People kept on telling me, you’re working invest on things you like to buy, invest on travelling.

Dude, if I have all the money on earth why not? I am single and earning enough money, but being on this disease the value of money is so less. Medications comes in a high price even it’s on generic. How I wish that government can provide more assistance than we can enjoy right now. Aside from medicines we have laboratories to think and take. Lastly, we don’t know whatever will be the results because whether we take and don’t do all the prohibited things our body reacted so weird that sometimes we hit the range beyond, and whatever that will be it will be another additional expense.

Why deprived yourself to food? Eat as many as you can!

Thank you for your concern, but whatever I eat reflects on my health levels over the laboratory. Veggies has always been the safest food I can eat, but still there are veggies that I can’t eat. Lentils and legumes that are so scrumptious. Red meats, exotic internal organs of animals, stresses our kidneys badly which made it deteriorate itself quickly which obviously not good. I am not promoting to you to live healthily I am just telling you that veggies are the safest food you can eat especially if you wanted to make your cells look younger.

And due to this too, I was able to be creative on inventing recipes to the food I can cook. Making the mushroom meat as my meat dough for burger. Enjoying zucchini as my noodle for a pasta. Lastly, a natural pizza sauce for my beautiful lovely pizza.

Did you know that I even feel guilty at times when visiting or having an overnight at my friends’ house in which their whole family has to adapt to the food that I am allowed to eat? Like they really take an effort to prepare meals that are just within my diet. To my friends’ families who has been my second families too, thank you so much for understanding and loving me.

Why don’t you value your beauty? You’re beautiful, wear make ups, color your hair, have mani and pedi!

Gal, I know I am gorgeous and I can make myself more attractive if I do all of these. But the last time I colored my hair, placed a henna tattoo on my skin, placed colorful manicure and pedicure on my fingers and toes, wear beautiful eyes shadow and make up, my doctor explained to me that whatever I put on to my skin will still be filtered by my kidneys. And to my fear to ruin my kidneys earlier I chose to be moody on my makeup days. There’ll be days that I am so energized to the thought that I am too beautiful and wear all the makeups I have in my pouch. There’ll be days I feel like relaxing my skin from any chemicals by not wearing make ups or just have my plain skin. I also don’t wear makeups when I am really ill but there’ll be times when I see myself so pale and needed to bring myself to the hospital I’ll wear at least a lipstick.

Why so lazy? Get on bring out your highest energy!

I remember my classmate asked me to clean the window, but one of my classmate said not to allow me to do as she understood the disease, but one of my classmate left a negative comment, “Kapag may sakit sa bato nagiging batugan.” Or “Having a kidney disease made a person paralytic.” Back then, I didn’t make any negative reaction on it, I tried my best to understand that he doesn’t understand the disease.

Nothing in this world made me want adventure and life, however we easily get that fatigue in our body. I do apologize to the people that I slept at while talking to me. I apologize to the people who asked me to do some gimmick to trips with them, it’s because I value rest for me to avoid sickness. I also apologize at the moments wherein y’all sounded so excited and I was like the monotonous lady you met. But guys, thank you for understanding.

Get married! You’re getting old.

One time, I met my old college teacher from and even because one of her grandson is studying in the school I'm teaching. She told me that on my condition I should be getting married, and I just smiled at her and told her that I am still young. She might be reading this, sorry ma’am but I need to share my thoughts here.

Dating has been a challenge to me too. Due to many restrictions, though I am trying some of those restrictions once in a while, I am feeling guilty because I think I am depriving my date for whatever plan s/he wants to do. Too many explanations to expressed at times that I will tell, yes you can do it but up to this step or up to this process I can attend, eat or do it because I need to preserved my self’s health.

I remember I had a good guy date, but he said that I am boring because instead of his plan to go to an adventure park that may raise our adrenaline we ended up walking ourselves in an art museum.

A doctor I dated sincerely asked me why am I having too many restrictions over food because he is too addictive to different types of food. I explained to him the reason, and when he knew the reason, he said, “I think we can be just good friends.”

Another person said, “Oh that’s so fine, I am just here. I can take care of you. “But when the time that I needed to be sent to the hospital and I got nobody with me to send me to the hospital he just disappeared like a freaking mushroom. Cool!

I mean the feeling of being in love and being loved is so amazing, getting the right ones will come naturally on its perfect time. Marriage for now is not an option as well since, I think I haven’t fully enjoyed my youth yet. We all have our own cruise and it’s taking its time on reaching each wonderful island.

Oh why so moody??! Why so sensitive? So emotional. Grow up!

Whoah! Calm down! Take it easy on me!

Honestly, yes I am moody. There’ll be times that you all need to be so happy and suddenly I am feeling tired and that made me look either a bitch or someone that is so sad. But, don’t be confused. I have the happiest feeling for you, and I do celebrate wholeheartedly everything you have.

Sensitive at times that I heard a comment that seems that I think I hurt that person’s expectation. Among all the prohibition of this disease and among all the limitations, sometimes people leave comments I am Kill Joy, boring, paralytic, and monotonous but, believed me I also like to be in the same shoe like you but it hurt me that I can’t at times. But for those people who get along to this badass attitude of mine, thank you for all the patience and love.

Emotional, well I believed I didn’t join the generation of the emos but what I believed on being emotional is just that I am more appreciative of the beauty of life. Every moment I savor is a gratefulness that I saw a milestone of someone, of my family or even myself.

So those are just my moments. What’s yours? Comment it down or visit my facebook page at https://www.facebook.com/liveloveandhope/ and comment your own experience. I would love to comment back and experience the joy of living a life with you all.


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