Lupus Story: Pam De Guzman

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.

But yes, this lupus has changed my life. I was once a frustrated athlete. I used to run and play badminton. I used to go out and party all night. Until one day, I can no longer walk an hour. Then I began to lose my skeletal muscle mass and strength. Too weak to do the things I used to love. I was about to leave my job and stay at home instead.

Aside from losing my physical strength, I broke down emotionally and spiritually. Proverbial bad day or perhaps a rough few weeks as if you’re one breath away from the last straw. I sleep less than usual. More of emotional distress is looming large in my life. My mind was so cluttered with repetitive thoughts that something bad is going to happen. Self-hate, feeling of worthlessness, hopelessness, helplessness, and sometimes a suicidal thinking. I had difficulty coping with my everyday situation. I cried to sleep. My whole personal structure was melting.

And above all these, I lose my spiritual wellness. I feel being punished and singled out. I feel betrayed by GOD. I asked HIS intent and purpose. The feeling of “why me GOD” is real. I questioned GOD’s fairness. I may have sinned but to go through this? (Sigh)

But with the help of my family and friends who truly prayed and cared for my recovery I’ve been able to see the perfection of all that has happened. They all part of my journey. The sense of accepting and embracing whatever has happened in my life, realizing it is all an initiation into the deeper mystery of my infinite and unspeakably magical being.

Now here I am, starting to build a good come back. To bring positive difference. Hoping that my story will heal somebody else.

I am PAM DE GUZMAN, diagnosed August 02, 2015 with MIXED CONNECTIVE TISSUE DISORDER (Scleroderma + SLE).

LUPUS STORIES: “My Journey With Lupus” by Agnes Santos

“My Journey With Lupus”
By Agnes Santos
I am Ma. Agnes H. Santos, 46 years old, and a mom to three boys. My children are my love and happiness. Because of them, I fight! I am stronger than Lupus! This is my story.
Call me Annie.
My journey with ” LUPUS ” has not been that long yet. About 6 years. I was diagnosed with Discoid/SLE Lupus Erythematosus with finding lesions on the face. I have been diagnosed in 2010 at the age of 39. Little did I and my family know that the battle against lupus was going to be difficult to fight. This is because most people don’t know what lupus is.
Having lupus is as if something evil that exists in my life for almost 6 years. I wish I could throw it out in the ocean. Oh if only I could, I would. It made me cry. Very often, I cry and just cry. It gave me extreme mood swings and even made me look older than my actual age. It’s very difficult to get up in the morning and sometimes, my walk home is excruciating.
The arthritis lupus has given me is a burden. Most of my income goes to the medicines. There are days I feel completely depressed and disgusted with myself. Sometimes, when I look in the mirror, I can imagine lupus laughing at me. I used to enjoy the sun’s warm rays and now, I can’t. Almost every physical activity I love to do, now seems impossible.
And oh, these Lupus fogs? I forget many things! Sometimes, It’s hard to have a conversation. I have eye problems, retinitis pigmentosa, and rashes.
Time made me accept and embrace what I have. With lupus, I have become more mature and made me compassionate. I have learned many things on this journey including letting go fears and hate.
Sometimes, I am glad to say that I have Lupus, which sounds extremely contradictory to everything I just said. Because I realized that without it, I would never have gotten to meet many amazing people I have met along this journey. People who really care and look at you as a person rather than someone with a disease.
I have learned that I am not alone in this journey and that there are other people who have it worse.
Currently, I am glad that my lupus is tamed for a while. I thank God that at least I’m not dying at the moment or dead.
Despite my condition, I still manage to smile and go on with my life. I am lucky to have HIM by my side, always guiding me and letting me know that I am stronger than anything and everything.
Discrimination never puts me down. Instead, it pushes me up.
I pray they find a cure soon for me and my other lupie friends.
*You may share your lupus journey and submit it to

Take Two: Holding Back the Tears

“Take Two: Holding Back the Tears”
By Jenet Lisa
Who am I now? Am I really happy with my present life? Have I really accepted my fate? Those smiles, that laughter of mine, are they real? I am not really sure.
When I learned I had lupus, I kept asking myself these questions; where do I go from here? How long have I been living with this disease? How long do I still need to live with this disease? What are the sufferings await me? Above all, “Why should it be ME?”
I seem to keep losing faith; I seem to keep on losing everything. I don’t know what to do whenever pain attacks, my eyes are floating in tears, my mind is still full of questions. Until when do I need to bear this pain? It seems like my road is full of shards of glass that cause wounds in my feet where I can’t move a single step because of pain. My heart bleeds knowing that I can’t do anything to heal those wound; that I can’t continue walking my life’s journey as though nothing is wrong. I am sad that I can do nothing but cry because no matter the amount of medication, no matter how much money I spent, the wounds will never be healed. Every path I take has shards of glass that will continue to ruin my way to a better life. It has already partly ruined my life. Life is indeed rough, unfair. This illness is a gamble that I know I couldn’t win no matter whether I am an expert on playing game. No matter how I cheat in this life’s journey, I know I will never win. I know I will loose the game.
“Every path I take has shards of glass that will continue to ruin my way to a better life.”
I do not know what awaits me in the coming days, I really don’t know how to deal with this illness, Today, I can still smile, I can say with my head up I can say that I am fine! I can say that there’s nothing wrong with me, that everything will be fine, that I am Okay. But sometimes, tears fall as I think of the future. What if I become blind? What if I am paralyzed? What if my organs have already affected by lupus? What if things go wrong? Where the hell will I get money to spend for my medications? Where in this world can I buy strength? When this fear of mine becomes real, will I Still be able to smile? Will I still be able to laugh?
Whenever I think of these things, I can’t help my tears from falling, because even if I hold it back, my tears just fall. They fall because of so much heartache. I feel so sad because I don’t own my life. I feel sad because destiny chose me and I have no power to control it or change it. I am just a human being who owes everything to God.
Should I be thankful? Yes, I should, because my family has stood by me, because they never left my side. They are there even at the darkest hour of my life and I know they will stand by me no matter what happens. For this reason, I know I can still Smile, I know I can still laugh because even if this damn world will take everything from me, I am sure they can never take my family away from me. My family is my strength, When I become blind, they will be my light, If I become paralyze, they will be my bed, when things seem hopeless, they will be my hope. So much my family will do for so, I know, I can still be happy.
Walking on a road of broken glass is really painful, it has never been easy, and it is a constant fight. I know I will never win but I will continue to fight. It may cause so many wounds but I will not give up. I will face each trial, I will play each game, I will lose but it’s okay. Each step, each ache, each tear may lead to an ocean of tears, but I will hold the tears, I will hold it back, I will try hard so I can finish the game right.
*You may also submit your lupus story to