Month: May 2017

“A Light in the Midst of Darkness!”

By Jenet Lista

I knew myself very well then, but right after I learned that I had “LUPUS”, Things changed as though they will never be the same again, never again.

After I had known about my illness, Tears fell endlessly. Shocked, I didn’t know what to do. I was alone and had no one to talk to. I went home crying knowing that I will never be cured. I don’t know how much tears I had shed. I don’t know how many questions I had asked. Why should it be me? What have I done to deserve this illness? I was so worried. I couldn’t help to think of what was going to happen next. Shall I die soon? Shall I die in pain? Until when will I live? So many, many questions stuck in my mind. Questions I couldn’t find an answer. I wasn’t aware of this disease. Why does God explain it to me in such crazy way? Why?

It took me quite a while to accept my condition. I cried each day, each night, each minute. I was so weak, I was so scared. Will I be like this every day? Weak? Fatigued? I felt like I was battered inside out. I thought I could no longer do the things I wanted. I felt so pity for myself. Already I don’t know what to do. I felt so hopeless but I knew I need to be strong. I must endure the pain. I must be a friend with my sickness and fight for my life.

I started to bring back my enthusiasm; I tried hard to bring back my smile. I tried hard to push my tears away. And I realized that it wasn’t hard at all to do these. Eventually, I got back to my old self!

I decided to join a Foundation; I wanted to do this because I felt I was not the only one who has lupus. I wanted to meet people who were also suffering from this illness because I wanted to gain knowledge from their experience. But, upon seeing other lupus patients, I didn’t how to react. I didn’t know what to feel.

Should I be glad? Should I be sad? I felt so much sadness instead of gladness that day. I felt sorry for those who suffered so much hardship brought by the disease. I felt sorry for those who cried hard from so much pain. Some of them suffered from complications in kidney, lungs, liver, eyes, heart etc. Some became sluggish, some became partly blind, and some had to endure a lot of pain, discomfort, and hardship without a caregiver. I found my problems and experiences nothing compared to what they’ve been through. It was at this point when I realized I was in a far better situation than them. But still, it brought me so much frustration. I felt more scared than before. I was afraid that I will be experiencing the same stinging pain. I know that time will come, but question is, when is that going to come? How soon will it be? I need to be prepared because honestly, I am not yet prepared.

Maybe accepting my condition is really hard to do. Having said that, to say that I already accepted my condition is somehow untrue. There are times when I cannot help but cry, times that my smiles are all lies. But still, I’d like to pretend that I am happy and everything’s all right because when everyone else believes that I’m fine, I forget for a while that I’m not, and it helps!

Somehow, I feel fine.

Six years ago, I was diagnosed with Systemic Lupus Erythematosus: a chronic, autoimmune disease wherein the immune system mistakenly attacks the body’s tissues and organs. Lupus is incurable; I live with it the rest of my life, but can be managed through maintenance medication such as steroids and Plaquenil ….It scares me to think, however, that I have to depend on them for as long as I live otherwise I would suffer from all the symptoms.

The meds came with side effects; I developed a moon-shaped face and was losing big chunks of hair in high school. I became so vulnerable and short on self-confidence. I had big ambitions, but lupus took them away, that I only thought about getting a college degree sooner than later.

Lupus is a daily struggle. I get up in the morning usually with swollen joints, sometimes in searing pain that I can barely walk. When the meds wear off by the end of the day, arthritis comes back. The pain also shifts from moderate to severe whenever my doctors decide to taper off my meds. Coping with lupus includes painkillers. As much as I maintain a strict diet and do exercise, I cannot control the pain. Unrelenting pain and fatigue barge into my body without a warning. There were times that the only thing I could do was stare at the ceiling before going to bed and wonder if the next day will be less painful.

My doctors monitor my health condition through different lab tests every month….kaya nasanay na rin ako sa injection. Besides preparing for exams and reports for school, I also had to prepare myself for lab tests. Kakabahan na nga ako sa mga midterms at finals, kakabahan pa ko sa resulta ng lab tests.
Keeping up with school was grueling – heavy workload and pile of readings – but I tried to excel in my classes as much as I could. I did it to maintain my scholarship grant all throughout college that would help cover my medical expenses. I also did it because I wanted to prove something to myself and to those who see me as weak. Mama did not want me to continue with my schooling, but I felt the need to pursue the only goal I had left for myself back then.

This battle pushed me beyond my limits. I did not let lupus define nor consume me. I have filled myself with passion and determination to do things that I can still do. Living life may not be that easy, but I see every day as an opportunity to grow, learn, and accept the love and care of those around me.

I am truly grateful for my family and friends who were there for me and who never treated me like I’m a burden. Mama never gets tired of taking care of me and looking for alternatives to make me feel better; my best friend for constantly being my rock and for understanding everything that I go through. I appreciate my Dream Team friends who always got my back and would sacrifice their time to go with me for my monthly check-up. I am just so thankful to all those I’ve met along the way. You all lift me up ? God is so good, He reminds me all the reasons not to give up and helps me see that there’s still so much to be thankful for!

Kat Hizon
AB International Studies
Major in Development Studies, Minor in Gender Studies
Cum Laude
Miriam College

Meet my ‘SuperwoMOM’

by Kathrina Yarza
October 28, 2013

original post: https://www.facebook.com/KCATCAN/posts/1324864667630945:0

 

 

When my mom was diagnosed with Lupus in 2000, she never obliged us to take care of her or accompany on her checkups and activities because we were so young then. I never really understood what she was going through until I saw her enduring her suffering just to attend to my needs and accomplish all the paperwork for my upcoming surgery back then.

My mom, Madeliene Lopez Yarza or Madge is selfless. She never buys anything for herself unless it’s on a bargain. Whenever she has extra money, she would always prioritize our needs, and set aside her own. I would often tell her to take care of herself first. There were even times that I would refuse her help and demand that she attend to her needs first. But she still won’t and that would really break my heart.

I’m just amazed at how my mom, a sick person, can manage to take good care of another sick person, whether it’s me or anyone in our family. Even my close friends and relatives also felt her tender love and care. She is often in deep pain but she knows how to ease away our own pain. My mom is truly my inspiration. Here, I share her heart’s desire to hopefully inspire others.

“Lupus is an autoimmune disease where the body’s natural defense or immune system attacks its own tissues instead of foreign substances like bacteria and viruses. It’s a chronic disease that causes inflammation — pain and swelling. It can affect the skin, joints, kidneys, lungs, nervous system and other organs of the body. Most patients feel fatigue and have rashes, arthritis –painful and swollen joints and episodes of both low and high grade fever. Lupus is the common name for systemic lupus erythematosus or SLE. There is no cure for SLE and it can be fatal.

I’ve been suffering from lupus for almost 14 years now, with complications from long-term use of steroids. I was diagnosed in late 2000, months after I gave birth to our youngest son. I had terrible joint pains in my hands, mouth soars, stomach pain, episodes of low grade fever, hair loss and very low blood count.

At first, I tried to endure all the pain, as I thought it was just arthritis and I was still too young for it. But later, I was forced to see a doctor when my hair started to fall. I could not eat because of oral ulcers and severe stomach pains that resulted to weight loss. Steroids were injected on my scalp to treat my hair loss but they were not effective. My stomach pains were unbearable so I sought a doctor who has enormous knowledge in autoimmune diseases. He had me undergo a series of laboratory tests. When the results came out, I was referred to a hematologist because I seem to have aplastic anemia. Thank God, it was not it. I then I went to a a rheumatologist, Dr. Esther Penserga who is like a mother to me. I had another series of laboratory tests and the result was positive; I have lupus.

It was so depressing. I don’t know anything about this disease. I kept asking myself, “Will I die soon? Paano ang mga anak ko?” I researched about it and it made me even more scared. But when Dra. Penserga encouraged me to join the Lupus Club at the Philippine General Hospital, I was able to understand and accept my disease. I became more at ease when I met people who are in the same situation. Learning about their experiences inspired me so much and gave me the strength and hope to continue moving on with my life. I was motivated to attend the regular monthly meetings to gain more knowledge about SLE. I learned how to live with it while taking care of myself.

Family members and caregivers are encouraged to join the meetings too, for them to understand what a lupus patient is going through and to know how they could give support. During those times, I would attend the meetings all by myself and I couldn’t help but feel envious of the other members who had someone with them. Dra. Penserga comforted me by saying, “Madge, if your environment can’t understand your disease, then get up and help yourself. Be strong and you can do it!”

Pain comes in all forms. How we manage our pain is up to us. The best way is to just push it through. I learned how to find strength and hope in all of my pain. I then realized that God has given me this trial for a reason. It was for me to understand and know how it feels to be sick. I have always dreamt of becoming a doctor when I was young, but we could not afford it. Maybe this is God’s way of granting my wish, that I am able to help the sick people in my own little way, despite my disabilities.

Having a chronic disease has never been a hindrance in serving God’s purpose for me. Being sick and taking care of my sick daughter is a blessing from Him. My physical, emotional and spiritual strength comes from Him.

I am not a superwoman but I believe that this inner strength may be one of God’s reasons why I am here – to love and take good care of His precious gifts – my children, Kcat, Talitha and Maro.

And if times comes that I grow old and weak, I wish that I will be in a home for the elderly, sharing my stories and making them smile.”

My mom is not a superwoman with super powers. But for me, she is a supermom with a powerful heart. If you have lupus like my mom, counseling and support groups such as the Lupus Foundation of the Philippines and the UP-PGH Lupus Club can help you go through the emotional issues involving this illness.

 

It tingles my heart. What I’ve gone through and what I am going through today is nothing compared to the pain and experiences of others. Those who are still in their hospital beds fighting for their lives, I believe they deserve this spot more than I do.