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/

Living better with Lupus!

Hope for Lupus has launched its first publication entitled “Living Better with Lupus”. The book is written by HFL Founder Rep. Em Aglipay-Villar with Dr. Angeline Magbitang-Santiago, Dr. Evelyn Osio-Salido, and Dr. Geraldine Zamora.

The book talks about early diagnosis, types of lupus, problems with lupus specifically during pregnancy, and available treatments.

During the event, some lupus patients including Rep. Aglipay-Villar shared their experiences on the difficulties with lupus and how they cope with the help of their family members and faith.

The launching was held on July 15, 2017 in City of Dreams.

Hope for Lupus thanks its partners and sponsors for making the event possible: Blackwater, Ever Bilena, and Ruby Jack’s Steakhouse & Bar.

Rep. Aglipay-Villar: Living better with lupus and sharing tips

Seven months after its launch, the Hope for Lupus Foundation, Inc. has come up with a comprehensive guide to help lupus patients and their families understand better and cope with the life-threatening disease.

“Living Better with Lupus” is a very personal project of three-term Diwa party-list Rep. Emmeline Aglipay-Villar, whose own condition she discovered 10 years ago as a young lawyer.

She is married to Public Works Secretary Mark Villar, with whom she has a 2-year-old daughter, Emma Therese.

 

It took time before Emmeline ascertained her condition, since the symptoms of lupus could be mistaken for other medical conditions. Worse, there are only few specialists handling lupus cases in the country.

The lawmaker said the aforementioned factors became her main motivation to publish the guide.

 

“After setting up the foundation, I already pitched the idea for a book,” she said in an exclusive interview with Lifestyle. “Many suggested that I talk about my own experience with lupus, but I wanted more than that. I don’t think people would really be interested (in my story) but (more in) something they can refer to. I wanted something that would be really useful.”

Life-long disease

Systemic lupus erythematosus (SLE) or lupus is a life-long disease in which the body’s immune system turns on itself and attacks the organs, mistaking them as foreign and harmful.

Common symptoms are the butterfly rash that appears across the cheeks and the bridge of the nose, shortness of breath, painful joints and muscles, frequent mouth sores, excessive hair loss, pale skin, fever and fingers that turn white or blue after exposure to the cold.

Many of the 15 chapters open with short introductions by Emmeline recalling her experience with the disease. Some chapters have notes written by other patients. “I did not experience all the symptoms, so I invited other patients to share their experiences,” said Emmeline.

“Living Better with Lupus” takes the reader into a friendly Q&A on how the disease affects various parts of the body. The 195-page book also deals with issues that patients and their families are likely to ask.

Emmeline had valuable assistance from three professors of rheumatology at the Philippine General Hospital. Co-author Dr. Angeline Magbitang-Santiago helped conceptualize and stage at the Cultural Center of the Philippines the Lupus Butterfly Warriors’ photo exhibit that highlighted the strengths of lupus patients.

Dr. Evelyn Osio-Salido has published a research paper on SLE, and Dr. Geraldine Zamora-Racaza is involved in various pro-poor voluntary medical efforts.

“This book could be their handbook… because not all the symptoms manifest at the same time,” Emmeline said, referring to patients and their loved ones. An initial 4,000 copies will be available in select National Book Store and Full Booked branches.

Emmeline noted that she wrote the chapter on dealing with lupus during pregnancy. She has a lupus complication called antiphospholipid antibody syndrome (Apas) where antibodies in the patient’s body mistakenly attack the fetus. This condition makes the pregnant woman with lupus susceptible to miscarriages and blood clots.

Emmeline said her obstetrician had to partner with a pediatric cardiologist when she was pregnant to ensure that the child she carried would remain safe. This meant regular ECGs for baby Emma when she was still in Emmeline’s womb.

Public Works Sec. Mark was then the Las Piñas representative when he and Emmeline met and fell in love. Emmeline did not hesitate to bare her condition to Mark before they married in 2014.

Emma, who was born a year later, did not have neonatal lupus when she was born. Emmeline, however, acknowledged that she and Mark continue to face many challenges because of lupus.

“Flares” or complications triggered by lupus would manifest at inopportune times, making Emmeline’s condition very unpredictable. Just last summer, she was supposed to join the rest of her family on a European trip after completing her finals for a masters degree in law.

But she was forced to stay in a hospital in Venice due to a flare. This one, however, felt nastier than previous attacks. Mark hastily left Manila to be with her in a hospital that did not have a rheumatologist.

“Mark was with me the whole time,” Emmeline recalled. “He sat beside me, never complaining. He really cared for me. It was a good thing my parents followed to take care of Emma.”

Emmeline said other lupus patients are not as lucky. One elderly woman’s family mistook her symptoms for arthritis and discovered her real condition only after an excruciating migraine.

Emmeline also knows of a domestic help who asked to be allowed to go on vacation in her hometown, not knowing that the long trip and the sudden change in weather would lead to death after a swimming excursion.

“That’s why it was so important to come up with a book that discusses lupus in the Philippine setting. When I was newly diagnosed, I didn’t have any reference material, just information on the Internet which is not always reliable. Also, some of the information are not written by doctors but by bloggers,” she said.

Hope For Lupus Foundation Inc. will launch “Living Better with Lupus” on July 15, 2-5 p.m., at Ruby Jack’s Steakhouse, UG/F City of Dreams, Pasay City.
Original Post: http://lifestyle.inquirer.net/267836/rep-aglipay-villar-living-better-lupus-sharing-tips/