Flight of a Wingless Bird

First of all, I would like to thank Ate Marilyn for giving me another opportunity to write in Soaring Butterfly. This wonderful newsletter gives us lupus patients a chance to reach out to others and share our experiences, thoughts and feelings we rarely express to the world.

I thank God for letting me finish my college without having any serious health problems at all. I remember being excited to once again continue schooling like a normal teenager. (I was in homestudy program during my highschool days.) But it wasn’t easy introducing myself. I know I have to let everyone in school know my real condition. I want to let them know all my limitations so that they will soon understand some of my unusual behavior. And I was gladly accepted.

Still, I have some social problems on my own. I’m not an open person. I am always a bit aloof with crowds around me. I have a few friends, but still I try to gain attention by being nice, polite and smart in class. I may not be able to hang around with most of them but I was contented with my lone life where no one disturbs me and no one dares force me to do things I’m not used to.

Little by little, things changed. Every term, I became more lively, comic and comfortable with those around me. I gain new friends, new knowledge and new lessons. Soon my friends became the light of my school life. We love teasing each other, singing aloud, sharing food together and helping each other. No day passes without a sound of laughter escaping our mouths. Even teachers have fun with us. In short, they are my stress relievers. In spite of the stress in school, it’s amazing how I managed to get through it. I thank God for giving me once again new unforgettable memories to cherish.

I just graduated from my 2-yr computer programming course last May 2009. Honestly, my last days in school were the worst of all. We all underwent the most difficult part, that is our thesis. I hate to say this but it almost wiped out all the happiness inside of me. I have shed a lot of tears and endured a lot of stress and emotional pain, even anger. I almost gave up everything considering the fact that I carry most all the burdens of making the project. We underwent a lot of redefenses almost every week, requiring me to make revisions in the codes over and over again. It’s as if our suffering will never end. It hurts knowing we’re trying to perfect our system in vain, only to attain a somewhat disappointing grade. I can’t blame anyone for expecting high of me, but I think they should have known I have done my best from what I have just learned from them.

It even added to my frustration to hear that the bank where I was performing my on-the-job training suddenly dropped me due to my frequent absences. I didn’t understand why it happened because I clearly remembered my supervisor granting me permission to finish first my final exams and thesis projects before continuing my work there. I was even accused of sleeping in my desk, whereas I’m not. I was actually feeling uncomfortable because I was starting to have a lupus flare that time. It dawned to me that a busy, rigid, fast-paced corporate world out there isn’t the right place for a sick person like me.

After this, I suddenly lost confidence in myself. It’s as if my body and mind became so tired and weak of all I’ve been through. I just have to smile and appear strong for the people around me, especially those who still believe in me. I had to hide my sadness, fears and frustrations, so as not to worry and trouble them more. Now, I’m spending my time, thinking what do I really want to do and what is really important in life, while trying to heal the wounds inflicted on me.

I just came to the conclusion that we have to accept that there will always be angels and demons in our lives. There will be people who will cause you to suffer and there will be ones trying to keep yourself together. It’s a fact and we cannot do anything about that. What is important is that you must decide for yourself which of the two you would become, an angel or a demon? It’s a choice of living to make others happy or living while stepping on others. Of course, I believe we must strive our best not only to live but also to love that we may be remembered as angels who inspired others to appreciate the life God has given to us. In the end, we will not be measured by the height of our success, but by the weight of love we have given to one another.

Allow me first to introduce myself.  My name is Teresa Patricia A. Rentoy. Almost everybody calls me “Tippie.” I was diagnosed with lupus last August 2001. I was only 13 years old then and known to be a simple, shy but diligent student from a private school for girls in Alabang.  

My initial symptoms of lupus began to manifest during my first year in high school. I noticed some falling hair, experienced joint pains, had red, swollen eyes and easily got fatigued. At first, I thought it was just plain “pasma” as my mother kept telling me but my joint pains occur more often and everyday it never seems to get better. I didn’t take my condition too seriously since I was too busy with my school work and projects. School matters a lot to me for my life revolves around my studies. I already didn’t feel good during those times. I didn’t really know that I was already having a fever. I already forgot what it felt like to be sick since it had been years that I have never been sick.

One day, my mom felt that I was excessively hot. I was immediately brought to the doctor for check-up. My fever persisted for the next few days and was aggravated by severe pain on my back and hips. I had to undergo a series of laboratory examinations and was later mistakenly diagnosed as a case of rheumatic fever. I was given antibiotics and steroids which only relieved my pain temporarily. Aspirin was added to the arsenal of medicines I had to take but only caused more harm to my stomach. I had to vomit almost everyday due to its acidic effect.

After some time, I felt a little better until one night my fever suddenly went up again. The temperature reached to as high as 40.  It was so sudden and unexpected. I was immediately brought by my parents to the hospital and confined at the Muntinlupa Medical Center. So sad, I wasn’t able to enjoy my food for dinner that night, “crispy pata pa naman.” (sigh).

As I was staring at the mirror, I noticed weird butterfly-shaped rash appeared on my face. I couldn’t imagine the scary and disgusting look of my appearance. I felt real cold that I experienced severe chilling of my entire body. I was examined through C.T. Scan and was found to have fluid in my lungs. Ulcers in my mouth also began to appear. One of my doctors had my blood examined and she suspected that I have a connective tissue disease.At such a young age, I really didn’t understood what it meant.After various examinations done to me, my doctor finally decided to refer us to a rheumatologist who later suspected me with SLE.  She gave my mom a leaflet on Lupus for complete information and total awareness about the physical disorder.  I noticed my mom’s anxietythat she wouldn’t let me read the brochure at first.But I sneaked up and read through it.The symptoms were truly similar to mine.  My initial reaction?Excited!Funny, isn’t it?  I don’t know why I felt that way but I guess it was because I felt at ease that I finally knew what my real illness is and the fact that it was uncommon and is still a mystery to me made me even wonder. What could this be? Lupus is an autoimmune disease and a Latin word for “wolf.” It was first used in the mid-nineteenth century to denote a disease characterized by “malignant ulceration often destroying the nose, face, etc.”  Someone probably thought the damage caused by the disease resembled the result of an attack by a ravenous wolf.

Little by little, my parents and I gathered as much information as we could about my disease and they felt a bit comforted when they heard about a support group of the Lupus Foundation from UST.Too bad I was not able to join them the first time they attended a symposium followed by a festive Christmas party. I was not allowed to go out because I was under high dose of steroids then.

I had been in and out of different hospitals since my disease first manifested. I underwent a kidney biopsy undertaken by my Pedia-Nephrologist at the National Kidney and Transplant Institute (NKTI) which showed WHO Class III Lupus Nephritis (Focal Proliferative Glomerulonephritis).I had my monthly check-ups and laboratory tests to closely monitor my health.I had been ondifferent medications including prednisone for my Lupus.  After my kidney biopsy, I had to undergo a more intensive immunosuppressive treatment through pulse therapy.  I received monthly intravenous cyclophosphamide which required me to be admitted monthly at the NKTI.  This treatment almost drained my strength to the hilt. This also forced me to stop my regular schooling for a year.   I tried to continue my studies the following year through Home Study Programs where I could only go to school for consultations and tests while I do my own studies by modules at home and at my own pace thus reducing stress and pressure.  It took me 5 years to complete my high school because of my illness.

Just last year, I was again admitted at UST Hospital after experiencing what I may call the worst flare so far of my lupus. The flare caused more complications, virtually, affecting my entire body including my nervous system.  I was diagnosed with CNS Lupus.  I had to completely stop my homestudy until my recovery after around 2 months of treatment.With constant prayers and medications (thank God), I was back to normal and glad to have made it on time to finish all the requirements needed for my graduation.  God is truly good, He made me graduate this schoolyear.He even made me and my parents happier when I graduated with a medal of general excellence.And guess what? I had two entertainment personalities as my batchmates.  Ms. Sarah Geronimo and Darling Lavinia.  I had a chance to talk and become an instant friend to the actress Ms. Lavinia who happened to be my seatmate during the entire graduation ceremony.  How lucky I am indeed!  It’s not bad to graduate late afterall.

My years of lupus were not all as bad as I thought. Maybe it was because of my childish heart that made me open up and realize the simplest beauties and blessings of life. I learned a lot of lessons which I guess I would not have known if I have lived a normal teenage life like everyone else. I admit that there are times when I feel deprived of a normal social life but I guess that family, loyal friends, supportive and very understanding doctors and some generous people around me gave me enough love, encouragement and support that kept me to hold on with my life.There were many things that, actually, helped me to keep me out of depression. During my years at home, I become interested in computers which now helped me plan out my future course for college. I learned how to make various websites and even started a blog for myself where I can express myself whenever I could. I also indulged myself with different anime shows. (Yup! I am an anime fan. Most people don’t know about it.) I get to watch my favourite anime on television which I greatly missed during those busy school years. Watching anime inspires me a lot and armed me to fight off depression. It developed in me a silent sense of humor which keeps me alive and cheerful (sometimes crazy) everyday of my life.My condition induced me even further to build a stronger relationship with God and helped me understood more about myself, my life, my strengths, my limitations, my weaknesses, as well as my wrongdoings and priorities in life. I always believed that I am only a piece of a puzzle that God would fit me in at the right place at the right time.

Living with the wolf always reminds me of being Naruto. For those of you who don’t know who Naruto is, he is a popular anime ninja character who has a demon fox sealed within himself. He was feared and despised by everyone in his village but because of his determination to become the strongest ninja, he had to be strong and cheerful despite the dangers and difficulties of the missions in order to gain respect. Not for long was he able to use the power of the demon fox inside him to help carry out his duty of saving people’s lives.Like Naruto, I also have a wolf inside of me.Instead of fearing and being ashamed of it, I must cope with it, control it and use it to my own advantage that I may turn this sickness into a real blessing where I, too, can make a difference in people’s lives. 

 “Naruto”

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Underneath The Endless Dome