Mel Cuevas: How I live with lupus

A former editor and now jewelry designer has been dealing with the ‘disease of a thousand faces’
By:  – Columnist / @Inq_Lifestyle
 / 12:04 AM May 13, 2014

Many people call it “the disease with a thousand faces.” Contrary to what others think, lupus is not rare; but the condition can be different from person to person.

Its manifestations and symptoms are as varied as the imagination allows, which is probably why many people know little or nothing about lupus.

An estimated 1.5 million people around the world are diagnosed with it—and some may not even be aware that they have it.

Doctors sometimes call it “the great pretender” because its symptoms mimic those of other illnesses. The name by which it is known alludes to the wolf (lupus is Latin for wolf); this is because some skin rashes caused by lupus bring to mind the bites of a wolf, or resemble the markings on a wolf’s face.

Most people mistake lupus as a skin ailment. But actually, there are many forms of it. One of them, discoid lupus, affects the skin in the form of lesions and scarring. But another form, systemic lupus erythematosus (or SLE), can affect any part of the body.

In a chronic, autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances like bacteria and its own cells and tissues. The immune system then makes antibodies that attack itself, causing inflammation to various parts of the body.

The only course of treatment is through anti-inflammatory and immunosuppressant medication. The cause up to this day is still unknown, but doctors attribute it to genetic factors that can be triggered by environmental factors like stress.

I have been living with lupus for almost two decades. At the time of my diagnosis, I didn’t know much about lupus, only that one of our former presidents reportedly passed away from complications of the disease.

Difficult to diagnose

Because the symptoms of lupus can be similar to those of other illnesses, it took a few years for my doctors to make the right diagnosis.

I can trace it at age 11, when I had a hemorrhage in my left eye. At that time, I was tested for leukemia, diabetes and other diseases you can name, but they couldn’t come up with any cause.

 

The next year, when my fingertips and toes started swelling, they thought it was rheumatoid arthritis. It was only a few years later, at age 17, when I started having chest pain, falling hair and a butterfly-shaped rash on the cheeks, that I consulted a rheumatologist. After some tests abroad, it was confirmed that I had systemic lupus.

To say that lupus changed my life is an understatement; aside from the occasional, unexplainable pain or fatigue that you get on your “bad” days, the changes in my physical appearance affected me the most, especially since I was diagnosed in my teens, an age when you can say that one’s self-esteem is at its lowest.

Weight gain and rounding of the face are just a few side effects of my medication (prednisone, a corticosteroid). My friends at that time can attest to how depressed I would get at my thinning hair, especially when I was put on cyclophosphamide therapy (a chemotherapy medicine) a few years later because of lupus nephritis (inflammation of the kidneys). I lost so much hair that I had to cut it really short. And even when my hair grew back, the texture was not quite the same as before.

Looking OK, feeling otherwise

Lupus affects people differently and it doesn’t always have outward manifestations. People assume that because I look OK, I am OK. Though I am thankful that I look OK, it’s also difficult for some to understand how I can feel well sometimes and not feel good the next day, and vice-versa.

It’s a difficult task, having to explain these things, when I can’t quite predict how and why things happen.

One thing I am very cautious of, sun exposure (prolonged sun and UV light exposure is said to trigger a lupus flare-up), would give my colleagues the impression during press junkets that I just didn’t want to tan, but actually, even if I wanted to swim and sunbathe all day, I couldn’t.

It was perhaps fate that I stumbled on a career in magazines, because it somehow made me cope in the only way I know how—with style. With lupus, I just had to accept that nothing in me can ever be normal, so I just created my own version of “normal.”

Even when I wasn’t feeling well, I used all the tricks I learned from friends and colleagues in the industry to help me look my best. I styled and accessorized literally, and figuratively.

At each stage, I have tried to do what I could and not dwell on those I couldn’t. Instead of thinking that health is the absence of disease, I have come to believe that health encompasses joy, good relationships, peace and the ability to survive change.

Like other stories I’ve read about people dealing with lupus, people cope in different ways. I found that the best way for me is a combination of traditional medicine and alternative routes like meditation, Reiki, acupressure, among others. The latter alternative routes help keep me balanced and help me cope with stress (studies show that stress also contributes to lupus flare-ups).

Frustrating

When you have lupus, it can be frustrating that it takes more energy to do things that most people can do easily. Because of my medication, I can be prone to infections, but I feel lucky that I’m able to work and do things that I love. My current work setup, which involves working for the family business, designing jewelry and writing, gives me the advantage of flexible hours. Compared to other people, my schedule doesn’t just include penciling in my appointments; I also have to consider resting hours to conserve my energy. I have to learn to listen to my body and know when to slow down or stop.

Today, my condition is stable, thanks to a combination of medicines and several doctors who have been taking good care of me all these years.

It takes a village, they say, but credit goes to several doctors (mainly, Dr. Gary Feldman, Dr. Tito Torralba, Dr. Sandra Torres, Dr. Rody Sy, Dr. Benjamin Lazo, Dr. Carlos Naval, among many others), as well as the support of family and friends, for keeping me in the best shape possible.

Sadly, lupus doesn’t get much awareness and support.

 

Warning signs of lupus

Lupus can mimic the symptoms of the common flu. See a doctor immediately if you experience some of these symptoms:

1. Joint pain

2. Swelling of the legs

3. Butterfly-shaped rash on the cheeks

4. Bluish fingers

5. Fever

6. Hair loss

7. Fatigue

Read more: http://lifestyle.inquirer.net/159747/how-i-live-with-lupus/#ixzz4uSiWwLfI

Trisha Duncan: What It’s Like to Lose Your Hair at 19

Published on Sept. 8, 2017; Candy Magazine. Written by Trisha Duncan.

 

This isn’t the first time I’m talking about what it’s like to live with an illness. I’ve spoken about it as a speaker in talks to getting interviewed. I’ve even talked about it with someone curious about Selena Gomez’s famous disease, which I experienced first-hand, too. You see, I was diagnosed with Systemic Lupus Erythematosus or most commonly known as Lupus last 2015. It’s a chronic, auto-immune illness where my body’s immune system attacks its own tissues and organs, both the good and the bad cells. It is also known as “the great imitator” since it can imitate any illness until a test proves that it is indeed Lupus.

What started out as muscle and joint pains ended up as pneumonia and rashes on my cheeks, which the doctors called nephrologist, and later on, diagnosed as the big L. During my two-month stay in the hospital, I experienced a ton of scary illnesses—from having water in my lungs to my kidneys and liver almost shutting down. I even had to get a bone marrow aspiration and multiple blood transfusions among other medical procedures. But somehow, I managed to pull through with the help of my doctors, family, and friends. Lupus sounds scary because for most people it’s still a mystery and based on my personal experience, it’s horrifying. But while I was emotionally prepared for my medical battle, I wasn’t quite prepared for the aftermath of my war with Lupus.

When I was finally allowed to go home and recover, I had to go through a treatment that’s similar to chemotherapy in order to keep my immune system stable. I was happy to be home despite having to follow the doctor’s strict orders. But as my body continued to recover, my mind wasn’t quite ready yet. There were a lot of things that I couldn’t do and I couldn’t wait to go back to my old self. It broke my heart when it hit me that while I may be alive, I wouldn’t be able to live my life because my condition didn’t have a permanent cure and I have to be vigilant about my health at all times. Of course, losing my hair as an effect of my treatment took a huge toll on me, too.

Every morning when I woke up, I would see strands of hair all over my pillow. At first, I brushed it aside since it was normal for girls to have falling hair, but I noticed that my hair was growing thinner by the day and I was losing more and more locks. Eventually, my mom told me that I might have to shave my hair completely because of the chemo and the meds that I was taking. That realization hit me like a ton of bricks. I love my hair long and I’ve kept it that way for as long as I can remember and having to shave it all off broke my heart.

 

I was in denial for the longest time up until a big chunk of hair suddenly came off from the right side of my forehead.

Growing up as a model, it pained me to have to take a backseat from what I loved to do—my dream—because my lifestyle was heavily restricted and all my hair was falling off made me feel conscious about how I looked and made me lose my confidence in the process, too. When I finally agreed to have most of my hair chopped off, I looked into the mirror one last time and promised myself that once I’ve overcome this roadblock in my life, a new me will be on her way.

It took a couple of days getting used to having very little hair on my head. I’ve always had an elaborate hair care routine so it was a big change to suddenly go all low maintenance. When my mom finally allowed me to go out and go back to school, she asked me if I wanted to wear a wig. Although I missed my long hair really bad, I felt uncomfortable going out and about with a wig on. I thought that while it was good to maintain my old look, it’s better and stronger for me to accept my current situation and not hide or feel ashamed about my current look. While a bald head and various scars may look scary at first glance, for me it showed my strength.

 

They were my battle scars.

 

It wasn’t easy to go back and see all my pretty friends going out and having the best time of their lives while I was stuck at home recovering and trying to gain my confidence back. It hurt to be jealous, but I had to have faith. I know that one day I will be okay again and I just have to stay positive in order to get to where I want to be me.

It has been two and a half years since I got sick and lost my hair. Now, my hair is back to its long glory and I actually just had it dyed! My scars have healed and I feel healthy both physically and emotionally again! Acceptance starts from within and while I may have taken the long, hard road of self-pity and feeling broken, I can confidently say that my battle with the big L definitely made me into the strong, empowered woman that I am today. I’ve always been confident about myself, but going through my tough medical journey has shed a new light on what really matters most in life: to stay real and create our own version of what’s beautiful.

From Weakness into Strength: Scarlet Fuenteblanca

No human is perfect. We all have strengths that we are proud of and weaknesses that we try to hide. But instead of hiding our weakness, what if we embrace it? Using your own weakness into strength, would that be possible?

 

As a single mother, a lot can relate on how hard it is raising your child alone. Those hardships I have been through made me tough. Just when I am enjoying life as it is, another challenge came in to my life. I was recently diagnosed with Systemic Lupus Erythematosus commonly known as Lupus. Yes, me too… I find it hard to pronounce as well! So, let’s just simplify it instead. I want to use this opportunity to spread awareness. Not all of us know what Lupus is neither do I until this happened to me. Well, as they say life is full of surprises! This is a surprise that turned my life upside down. When the doctor told me about the sad truth, I didn’t tell my loved ones right away. I was so afraid, thwarted and depressed. I began questioning, why does it need to happen to me?

 

What is Lupus? As most of us know, it is a chronic, auto-immune disease. But the truth about this sickness is not well known to us. It is a sickness that the antibodies or the soldiers don’t recognize the real enemy. Instead of attacking only the harmful virus or bacteria, it attacks the body as well. Mostly, it damages the body’s internal organs like the kidney, the heart and the brain. There is so called “Lupus cloud.” This means a lupus patient tends to be very forgetful. There are a lot of auto-immune diseases like Diabetes, Psoriasis and Leukemia. Lupus is not contagious nor can be transmitted sexually because it is not caused by a virus, bacterium or any other infectious agent. However, vertical transmission (mother to fetus) would be possible. The cause of it is still unknown that is why until now the cure is still out there waiting to be discovered. It cannot be treated like the way they treat cancer, leukemia and other auto-immune disease. The only thing to do is manage it like having high-blood pressure. It is a complicated disease that most doctors call it as the “Great mimicker” because it is not easily diagnosed. Most of the time, Lupus is the underlying cause of a sickness. Like in my case for example, I have been undergoing constant therapy for my back pain for 5 years. Eventually, my pain progressed to my muscles up to my joints. The Rehab doctor diagnosed me of having carpal tunnel. Only to find out that the real cause of these pains is Lupus. Only a Rheumatologist can give the right tests and diagnosis about this illness. I can say it was some kind of luck when my doctor referred me to a Rheumatologist when he noticed a symptom from me that is not related to my carpal tunnel syndrome. I somehow can say that I was lucky because with all the bad results from the tests, my organs are still healthy.

You reap what you sow.

 

I guess it really pays to live healthy with pets! My stress reliever was to dance and embrace my cats. I love to dance! I always try to have work and life balance. I love adventures and do travel a lot! It would be better to collect experiences than sickness because you are over worked. The worst part of it is that I cannot do the things I can do because I am too old to do it. You have been spending your entire life sitting in front of a computer to grow old. It is not healthy. Go out, smell the fresh air! Meet people! Experience other culture. I don’t have vices like smoking nor drinking. Maybe that is the reason why my organs are fighting to be strong. They are not giving up on me because I took care of them most of the time.

 

Embracing the truth, your weakness can be your strength.

 

Yes, Lupus is a very complicated disease that might lead to death. What are the symptoms? Mostly are joint /muscle pain, alopecia (hair loss), fatigue, photosensitive, and Raynaud syndrome. But not all Lupus patients have same symptoms. Only a Rheumatologist can tell. This now explains why I have been in back therapy for five years. Before I thought I was getting lazy to do some house chores as I feel so tired and would like to sleep all day long. As a Lupus patient pain will always be constant to us. The hardest part of it is waking up in the morning. The pain is so much intense after we sleep. It was a challenge for me on how to go to the office without being late or calling sick. But instead of being depressed because of this sickness, I stood up, accepted it and told myself. “I may have Lupus but Lupus doesn’t have me!” So, I joined Lupus support groups to learn more, spread awareness and encourage my fellow “Lupie” to keep on fighting. Maybe this is my new task in life… God knows how strong I am that is why I have this. To spread Lupus awareness through my life! Even though I am in this fight every day, I still manage to be one of the perfect attendance awardee for quite some time. I have been awarded as the most energetic on the recent Zumba event organized by our HR. I joined a test program where doctors are trying to find cure. I am like you fighting an endless battle as long as we live. Our difference is that I am physically, mentally and emotionally challenged to be strong every day. Imagine how far you can go, knowing how lucky you are living physically healthy. If I can do it, you can do more! I would like to use this opportunity to say thank you to my friend, Rocel de Mesa. She was the first person whom I spoken of the truth. She was brave enough to talk to me and became my prayer warrior. I may not be able to get through all of these without her powerful prayers! Also, I would like to thank my team mates and my superiors for supporting me. We might have difficult challenges in life, but these challenges should not let us give up our dreams and happiness. Keep on fighting… keep on going!

Original post: http://express.emersonpartner.cn/201706-2/en/1-10/

Happy Birthday Kylie!

“I am blessed to have another year added to my life. Thank you for all the people who greeted me and continuously praying for me. If you would ask me how am I doing? I still feel depressed, experience failures and suffer from pain. Like everyone else, we all have our own problems and this should not stop us from reaching our goals in life. Living with Lupus is like a running car with no engine. IMPOSSIBLE but come to think of it, I have a disabled immune system where it destroys my own organs yet I Am STILL ALIVE!! A MIRACLE. There’s a reason why God still strengthens me and wants me to live. If Rizal (co-bday celebrant) awakened the masses with Cancer, I’d like to be a part of spreading Hope for Lupus. It’s not the end. I may have Lupus but Lupus doesn’t have me #21#birthday #June19 #lupusawareness

photo taken by Michael See Apeles#

Lupus Story: Tiffany Uy

“Lagi ka na lang naoospital ah.”
“Bakit parang lagi ka na lang pilay?”
“PWD ka? Ano ba disability mo?”
“If you’re so sick, why don’t you just stay home??”

In 2010, I was diagnosed with Systemic Lupus Erythematosus and life was never the same. When I entered UP I thought I could adjust to the stress and handle a minimum workload of 15 units. In my first year, I was in the student council, enjoyed doing projects, and joined my first rally. My sickness worsened and I was scared of telling my professors and classmates how sick I felt. I would go to school with bandages on my knees and ankles. As the semester progressed I gave up going to class because I could barely walk. I was losing a lot of hair and my body was always bloated because of the steroids and other medications.

From UP Manila I transferred to UP Diliman. I thought that I would succeed in living a normal life but I still continued to lag in my studies and was forced to drop subjects because I was flaring (active Lupus sickness) and couldn’t walk again. I was advised to enroll in the Open University but I was determined to take another semester. I took the risk of continuing my studies because I wanted to make friends and possibly live the regular student life.

People would continue to ask, “Ano plano mo after graduating?” I would feel shy and just tell them that my goal was to finish the semester with the regular load (low expectations). It was a lot of pressure to be named “Tiffany Uy” to be honest. I felt insecure and could only dream to be as awesome as Tiffy Uy (fangirling inside). Towards the end of each semester, my health would decline and I was too scared to talk to my professors. I was too scared to tell my friends. I would gradually just disappear from each class.

As more semesters passed, I learned to ask my professors if I could do extra work to make up for my absences. Although I was really embarrassed to ask for help, I got the courage to ask my friends to tutor me in subjects I missed out on. I asked for power points, seat works and kindly begged for the time to be tutored. Thank you to my friends who pushed me to get through each sem. Thank you to my tutors August, Kuya Lexter and Carlos.

Di ako nakuntento and I wanted to do more with my life so I ran for the student council (yes crazy si atey.) The responsibility of being in the council challenged me to improve my health and keep up with my studies. It was hella stressful but also fun and exciting. I want to thank 24th and 25th for inspiring me to be more patient and teaching me to work hard without expecting anything in return because we do it for NCPAG and UP with love.

Thank you to the staff of NCPAG and OUR. Thank you for always greeting me with a smile and being so helpful all the time. You the real MVP guys <3

Thank you to my teachers, Momma Carlos and Professors. Thank you for giving me second, third, and fourth chances. Thank you to Dean Mendoza and Ma’am Cuaresma for checking up on me and my health. Thank you for the advice and guidance to improve the services and projects of the council.

Thank you to my dorm fam who did not get tired of my rants and looked after me when I could barely get out of bed. I will miss you both my little sisters.

Thank you to Nath, Zai, Jude and Alwin who kept my heart whole when things fell apart. Thank you to Boom, Arvin, Dex, Jeannine, Kyle, Kakai, and Meera for being the biggest and best support system, and tolerating my weirdness. Thank you to IGNITE for showing me that I can make friends and grow as a person.

Thank you to all the new friends I gained and the old friends that stayed with me through the years. Will always value our friendship. <3

Thank you to my doctors especially Dr. Bernal, Dr. Rodriguez, and Dra. Rodriguez. I would not be alive today (literally) without your care. Thank you to all the nurses, med techs and health care personnel who made my Lupus life better with your services.

Thank you to my mother, father, and younger brother. Thank you to my extended fam from all over the world. <3 Thank you for allowing me to stay at the dorm when I had work to do. Thank you for bringing me to the doctor and hospital. Thank you for the support. We made it guys.

To Ralph, thank you for borrowing books from the library for me when I couldn’t walk. Thank you for going to school early to help me walk to class. Thank you for running from Bio to AS 3rd floor to pick me from class because I couldn’t go down the stairs on my own. Thank you for the love.

To all the good samaritans who offered to help me to go up and down the stairs. Thank you. To all the people who asked if I was okay. I did not want to feel alone. Thank you to the One looking after me from up there. When I felt the weakest, I found strength in You.

To all the P.W.Ds out there, I know we may differ in circumstances but I hope we don’t stop building bigger dreams for ourselves. Thank you for your stories of strength and perseverance. We are all strong <3

UP humbled me with experiences that further challenged my intellectual capacity, strength of character, and ability to persevere against all odds. We are trained to ask questions, engage our professors in healthy discourse, and are confronted with realities that help us understand the struggles of different sectors. We are shown that we have the ability to create our own opportunities and we learn to laugh at ourselves because we are a work in progress. UP shapes each of us to become leaders in the service of the university and the nation. Maraming salamat UP!

TIFFANY ANNE ALICER UY
B Public Administration
Batch 2017
Cum Laude

 

Original Post: https://www.facebook.com/uytiffany/posts/10213283157812481:0

LUPUS STORY: “My Lupus Journey” by Cecille Luna
 
Hi, my name is Cecille Luna 34 years of age. My battle with lupus started 13 years ago. To be exact, i was diagnosed with SLE in 2004 and eventually develop to Nephritis Lupus in 2006.
My battle with lupus is not the same with others, as our doctors said, There is no same case when it comes to lupus. It was my last year in college when i felt something was wrong with my body. I was in 4th year and as usual, it’s a busy and toxic year to everyone. Struggling just to graduate and get the diploma you wished for.
 
Feb 2004 when i came to realize that my body is not responding with my thoughts. I always feel as if was drained even when just waking up in the morning.
 
At first, I just simply ignore it like when i’m also ignoring my sun sensitivity. I got reactions from my skin with the cream that I’m putting on my face. But then I started to notice something such as bruises in my body. My mother started to worry especially she sees my hair literally easily falling down. A day after, my body is in deep pain. I don’t want to be touched or moved. I just want to lay down like that. My joints and muscles are aching. I have a high fever and mouth sores. I’m burning inside, that’s how i feel. The next morning when I got a little better, my mother and i went to UST Hospital for check-up. My doctor requested for a lot of lab tests but definitely, they already had an idea what it is going on with my body. To make the story short, when the results were released, i was diagnosed with SLE.
 
I didn’t have a drama moment that time. I simply ask what was that. Is it a terminal case? I remembered ex-president Marcos died with that disease. Am i dying? My doctors explained but it was hard for me to understand my condition. Nevertheless, I was blessed because at least, I found a right doctor at the right moment. I was diagnosed at the early stage.
 
Life goes on as they said. I finished my study and graduate in time. Work and live a life as normal as i can. Until the wolf inside of me strike again.
 
September 2006. One morning i woke up that my head is like about to explode. My mother rushed me to the hospital to the emergency and contact all my doctors. This is what my Mother told me as during that moment, im already a lost soul. She said that I undergo MRI to find out what is happening. They saw that my memory bank (brain, left side) is full of bacteria. What i am experiencing is a brain abscess as they said. On that moment they rush me to the operating room. I woke up 2 days after. I lost all my memory. It was all drained.
 
My family, friends, doctors, they are all happy for the successful operations. My doctors assured me that my memory will come back in time but it will not be the same like before. There is a lapse moment when im tired. A lot of brain fog.
 
Keep moving! I was back to action. I work and do the things that made me happy. Live a life as normal as i can. In 2013 i decided to work abroad and i did it.
 
After 2 years i came back here in the Philippines. Then my wolf kicked me again. Feb 2016 and I was experiencing the hardest days of my life. I just recently lost my father. And i broke up with my 7-year relationship. Stress, lost, emptiness, and depression they are all over me. I just want to rest
.
That night my mother checked me in my room. she saw me shaking and vomiting. I was rushed to the hospital. I was having brain seizure. My brain was blackout for 2 days. As if your world stopped while others are moving. You’re physically there but your spirit is not. Then you come back to life from nowhere. That’s me!
 
Now i am okay. Alive and kicking. I don’t know how to tell story like others do. I just tell you how i can remember it and how i can relay it.
 
What i learned in this battle with lupus is simply like this: “what doesn’t kill you makes you stronger” Everyday that im still alive i know i am stronger. It’s not yet my time. God has given me this condition because He knows I can handle this. The new journey and adventure are on my way.
 
I am blessed aside from this condition. I have a loving family, friends, doctors, co-luppies support.
 
“No one has ever seen God; if we love one another God abides in us and His love is perfected in us.” 1John 4:12
 
I am a survivor and a keep fighter!
God bless us all!

LUPUS STORIES: THE STORY OF THE LOST GIRL by Raquel Apachecha

LUPUS STORIES: THE STORY OF THE LOST GIRL
by Raquel Apachecha
 
It was summer of 2006 when I started to feel something was wrong. I began losing my hair for no apparent reason. I had rashes all over my face and arms. I had pain all over my body especially in my joints that become severe whenever I was tired. That time, I’m in my 2nd yr in College and doing a part time job at the same time. I thought everything was just because of stress. Going to work in the morning, schooling at night. I always felt exhausted and weak.
One day, I woke up feeling sore, feverish and gasping for air. I can’t breathe well. My lungs and chest were like on fire and I felt like I’m dying. I was rushed to the nearest hospital and treated by different doctors, but none of them gave me the right diagnosis. Later on, the butterfly rash became evident on my face with accompanying sores all over mouth then the real verdict finally came YOU HAVE LUPUS.
I was caught unprepared and unaware of what was happening to me. Upon hearing the unfamiliar term, don’t know how to react. Lupus, I have Lupus. This means that my body’s natural defense system or my immune system attacks healthy tissues instead of attacking only things like bacteria and viruses and this cause Inflammation. “Me against my own.” Yes, weird as it may sound but this is what happening to my body. I’ve been into many chemo therapy procedures and steroids treatment in order to shut off my Lupus. Hospital became my second home. The four corner of my room was the only witness of my wailing night. I cried whenever I see my hair pulling down and slowly getting bald. I cried because of pain and loneliness. I cried because I knew I’m going to die. I cried because I’m I can’t accept the fact that everything will never be t he same. I cried because only thing I can do that moment was to cry.
 
 
Years passed, crying have slowly changed into a I cheerful smile and a thankful heart. I learned to accept my sickness. I learned to love what was left for me. Most importantly, I learned to love my family more. They became my strength and my reason not give up, I am surrounded with so much love even at times I’m difficult to handle.
 
Looking back now, I can see that my battle against Lupus has made me a better, stronger, and tougher. It brought me into a deeper relationship with God . It made me realize that life is too short to spent on evil thoughts. No more questioning God why it has to be me but instead I learned to value life and caused me to have a positive outlook.
 
I derived a lot of comfort from the passage of the Bible, knowing that after all was said and done, agree all the pain and struggle, after all the sufferings, God prepared a better place for me. This place is called heaven. In heaven, there is no more sickness and pain, no more crying and sorrow, no more death. Only joy, peace and love endures forever.
 
I will never know what is in store for me but I learn to commit myself to God for He alone has good plans for me, He does not wish to harm me, He plans to give me hope and a future. (Jeremiah 29:11)
Meantime, let me live and enjoy life with those I love and savor every bit of happiness while it last.
 
This Is The Story of The Lost Girl
My Name is Kelai
Lupus Warrior
 
*You may share your lupus journey by submiting your story to info@hopeforlupus.org.ph

Lupus Story: “A Light in the Midst of Darkness!”

“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.

Lupus Story: Kat Hizon

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

Lupus story: “Meet my ‘SuperwoMOM’”

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.