Lupus and the Cure

One of the truth about Lupus is that it has no cure, at least according to the doctors. So, once you are diagnosed of having Lupus, then you have Lupus forever. The only good thing, still according to the doctors, is that Lupus can be controlled and put-to-sleep.

Lupus Fighter Tours
Just like asthma. If you are diagnosed of having asthma, this diagnosis will stay while you live. However, this illness can also be controlled, but I just don't know if it can be put-to-sleep.

To let you know, when I learned that my real illness is not just an ordinary nephritis but a Lupus-Nephritis, I suddenly felt nervous. I was thinking that that time might be my end, and that I might be leaving my two kids to their father, considering that Lupus really kills.

But it doesn't mean that I am afraid to die because for us, Iglesia Ni Cristo members, death is not a defeat, but it's a win (victory), as if it's the end of the race, and it's making us worthy of the prize. However,  for me, it is sweeter to live longer here on earth along with my family.

Last July 2018, while I was lying in bed in the Divine Word Hospital and my eyes were closed, I talked to God, and asked Him that If I am worthy, I want to live longer so that I may witness my two sons raising their right hands and taking oath to God as real Ministers in the Church of Christ (Iglesia Ni Cristo). And I believe, God has granted my request.

That recent flare-up of Lupus was, I think, very fatal (for me). And by considering my condition at that time and my financial capacity, I can say, I have less than 50 percent survival rate considering that Lupus treatment is expensive, and I almost have no income because my salary is almost gone for my loans. When my husband brought me to the Divine Word Hospital, he only had PhP5,000.00 in his pocket. I couldn't even imagine that from that amount, we spent atleast PhP200,000.00 for the medicine and my confinement in the said Hospital, including the chemotherapy sessions in another hospital (RTR Hospital) in Tacloban City.

 If I am still alive now, it is already a miracle of God, and it's His answer to my prayers. It actually happened because of you, your concern to me, and your generosity. Thank you so much for the concern and support. I will never forget this. I owe you my life.

And I also know, it is God Himself who touched your heart. So, I always thank God for the blessings. That's the reason why I immediately returned to my duties in the church (as Choir Member and Finance Officer) soon as I regained my strength. Besides, God is the only one who can save me from this illness. He is the greatest Doctor. He is our creator. He is almighty. So, He can take away Lupus from me.  So, I need to keep my relationship with God strong.

It might be true that Lupus has no cure, but with God, nothing is impossible.

My Job and My Religion

You might have observed me leaving my work behind just to attend our worship service, church officers meetings and devotional prayers, and other church related activities. I do it not for anyone, but for God our Father. I always make sure that God is the priority in my life.

If you are my immediate head or once an immediate head of me at work, you might experienced being embarrassed of me when I left you (with full of respect) and my work behind for my church duties. I am really sorry for that. But I just needed to do that.

Remember, God is our Father, isn't it? And as a child, I need to follow His will so that I will be worthy of the blessings that I am always asking Him. That's why everything that is for Him is my priority.

You also have nothing to worry of me even if I heard what you had said about me when I left my work just to attend church activities. I really understand. And if you're wondering why I am very confident of doing that without the fear of losing my job, actually, it is because what I am doing is all for God. And besides of doing this for God, I am also well protected by our Constitution.

In the Philippine Constitution, we can read this in Article III, Section 5, saying: "No law shall be made respecting an establishment of religion or prohibiting the free exercise thereof. The free exercise and enjoyment of religious profession and worship, without discrimination or preference, shall forever be allowed. No religious test shall be required for the exercise of civil or political rights."

In other words, as a Filipino Citizen and a resident of the Philippines, I am allowed to exercise or practice my belief (religion) without discrimination. I am always allowed to take a leave of absence or under-time, for my church duties. And no one can force me to resign from work by pointing my absences and under-time that I had at work as the basis because what I did is part of my exercise of my religion.

After all, we are in a free country and we are protected by the law.

Lupus and AIDS

On Tuesday February 12, 2019, I accompanied our District Supervisor in visiting private schools that are under her supervision. As we entered the compound of the Holy Rosary Academy (Hinunangan), a student  approached me and asked, "Ma'am, are you from the DepEd?" And I replied, "Yes."

The student added, "Are you a DepEd's nurse?" I just simply answered her, "Sorry. I am not a nurse but a teacher." I smiled at her. I just don't know if she noticed my smile because it was  hidden by the face mask that I was wearing.

But why am I wearing face mask? Is Lupus Contagious?

Wearing face mask is one of the recommendation of my doctor. It doesn't mean that my illness, "Lupus," is contagious, because Lupus is an abnormality in my genes not an infection. The illness can be passed to the offspring through genes just like it has been passed through me by one of my parents.

So, if I am wearing face mask, it is not to protect you from my illness, but to protect me from possible infection or from the disease that I might get from the air. I need to protect myself because my immune system is currently compromised.

Compromised Immune System

Taken on
February 16, 2019, before
seeing my doctor at
Nephroline Dialysis Center

When talking about "compromised immune system," you might immediately think of a person having an HIV (Human Immunodeficiency Viruses) or suffering from AIDS (Acquired Immune Deficiency Syndrome). However, even if my immune is currently compromised but it doesn't mean that I have an HIV. The real reason why I have this immune condition is because I am taking immunosuppressive drugs such as the Mycophenolate Mofetil, Hydrochloroquine Sulfate and Prednisone. Suppressing or lowering  my immune or making it underactive is  part of the therapy against Lupus.

Actually, my immune system's current condition, which is called "Drug-Induced Immune Deficiency (DIID)," is different from that of the AIDS. DIID and AIDS are both immune deficiency but they are just few of the kinds of immune deficiency condition. We also have the Common Variable Immune Deficiency (CVID), and the Severe Combined Immune Deficiency (SCID).

Lupus Versus Acquired Immune Deficiency Syndrome (AIDS)

Lupus and AIDS are both immune-related illnesses, but they are directly opposite to each other.

The person with Lupus has an overactive immune system, while the immune system of the person with AIDS is underactive. And the person with overactive immune is well protected against infection, but the person with AIDS can easily get an infection.

With regards to the treatment, the treatment for Lupus and AIDS are opposite too. The person with Lupus needs to undergo a treatment that will suppress or control or slow down the immune reaction. While the person with AIDS needs a treatment that will energize, activate or increase the level of his immune reaction.

But of course there are cases that Lupus and HIV-AIDS do exist in one person. This happens when a person with Lupus is infected by HIV. I just don't know what would be the effect of HIV to Lupus. I have read a lot of publications about it but I found nothing that would be favorable to Lupus patients. But there were studies made about it, and researchers found out that the immune system of the person with both Lupus and HIV produced antibodies that fight against the HIV. More studies have been made for the researchers to find ways in getting vaccine against HIV. And soon, if these studies will be successful, I think, vaccine against HIV will be available in the market.

How To Diagnose Lupus?

It is said that Lupus is hard to diagnose considering that its symptoms are similar to individual illness such as allergy, nephritis, arthritis, diabetes and other diseases. Experts also said that the symptoms vary from one patient to the other. And symptoms that would manifest are depending on the organs affected by the disease.

I want to thank all the members of the HDPSEA
(Hinunangan District Public Schools Employees Association) for the aid
that I received. And special thanks to Ma'am Pat and Ma'am Magna.
God bless HDPSEA.
In my case, I am anemic (low hemoglobin level) for a long time. I am always allergic to anything, like when a mosquito bit me, the inflamed area as a reaction to the mosquito bite would have a diameter of more than two inches. I always had an inflamed ankles, which was diagnosed as arthritis.  I also lost a lot of hairs, including my eyebrows and pubic hairs. I also had rosy cheeks that some of you thought I was using beauty products. And then there would be times that I had edema on my face.

By simply considering these symptoms, nobody would think that my real illness is Lupus, especially that they did not come simultaneously.

Diagnosis Came Right

I can say that I am still fortunate that the diagnosis finally came right before my kidneys became useless. But it would be better if the diagnosis came early before it started to harm my kidneys.

Should I give the credits to my Nephrologist who upgraded the diagnosis to "Nephritis - SLE" from Nephrotic Syndrome? Or should I give the credit to my former Internal Medicine Doctor who upgraded the diagnosis from Nephritis to Nephrotic Syndrome?

Well, I think, the credit and praises should be given to the Almighty Father, the one and only true God. It's Him (God) who gave wisdom to the doctor in our local hospital who gave the diagnosis of "Nephritis," which she based it on the laboratory result telling us that my urine sample had plenty of bacteria. After administering a treatment procedure that she knew in treating a patient with Nephritis, she realized that the problem was still there even if after the treatment my urine samples were already cleared of bacteria. So, she ordered me to undergo ultrasound test of my kidneys.

Bringing with me the result of the ultrasound and other laboratory tests, I went to see an Internal Medicine doctor who told me that my illness was an autoimmune one, which he called it as "Nephrotic Syndrome. He even assured me that the diagnosis was 80 percent true and only the biopsy that would be made from my kidney tissue samples could tell and verify the diagnosis. However, every time I went to see him, he always asked me if I had rashes.(Maybe, he was suspecting that SLE was my real illness.)

The treatment procedure that was administered to me against "Nephrotic Syndrome" is a bit successful. In three months of taking corticosteriod which is known for its anti-inflammatory and immune-suppressant properties, my kidneys returned to normal... in size, and in functions. So, the doctor decided to taper my intake of steroid. After that, the doctor said that I was already okay.

But three months after I stopped taking steroid, the illness attacked me again. I was brought by my husband to a Nephrologist  bringing along with us the previous results on laboratory tests and ultrasound, just in case the Nephro-Doctor would be interested on my health history. By considering the diagnosis of my former Internal Medicine Doctor, the Nephrologist told us to undergo laboratory tests of my urine and blood. I was also brought to the x-ray lab, and then I also had the ultrasound test of my organs and also underwent the ECG.

When the doctor got hold of the results, she told me that I had Lupus.

But that news doesn't surprise us.  My husband had done his research already about Nephrotic Syndrome and SLE (Lupus).  They are both autoimmune diseases and the treatment is similar. The only difference between them is that the affected organs in the Nephrotic Syndrome diagnosis are the two kidneys, while in Lupus all the organs can be affected .... from Kidneys, to lungs, pancreas, heart, brain, blood, skin tissues, and other organs and tissues.

So, finally, the diagnosis came right. We also had an aggressive but intelligent doctor. But the problem was, we didn't  have ideas where to get the financing of the treatment.

What Causes Lupus?

Taken During the 6th Session
of Pulse Therapy (with cyclophosphamide)
at the Chemo Unit of RTR Hospital,
Tacloban City
Lupus, I think, had been killing humans before I came to exist in this world. It's not a new disease contrary to what people had told me. In fact, in a news article published in January 1986 (I was just more than a year old at that time), LA Times has this news item's head, "Marcos Seriously Ill With Rare Disease Lupus, U.S. Sources Say."

So, Lupus must be popular because it killed a popular man, President Ferdinand E. Marcos,... not just popular but a very popular man at that time. This disease was made popular by media men by following  the treatment procedures of the former President up to the time he breathed his last gasp.

However, up until today, none of the experts can really tell the real cause why this Lupus disease has existed.

For now, let us just settle our minds in an idea that this disease is genetic in nature . Anyway, some studies led us to the idea that certain genes that inherited by people has the higher tendency to develop autoimmune disease, including Lupus. However, even if you have inherited that Lupus genes, it takes certain triggers for it to activate and start attacking you.

The Triggers of Lupus

Experts say that few of the known triggers in the activation of Lupus disease are:

1. Sunlight. A person with Lupus genes is photosensitive. When exposed to sunlight, his immune system reacts and as the result he will develop skin rashes and damage to the internal organs.

2. Infection. If a person with Lupus genes got infected, his immune system reacts to protect him from the infection, and at the same time attacks his own organs.

3. Food. When the person with Lupus genes has eaten food that contains allergen or toxins, his immune system reacts to the allergen in order to protect him, but at the same time attacking his organs too.

4. Hormonal Change. After giving birth of a child by a mother with Lupus genes, her hormones (estrogen and progesterone, including the hormones produced by thyroid glands) have an immediate drop that causes her to feel stress and depression which is called "Babies Blue" syndrome or Postpartum Depression. This stress triggers the immune system to activate as a way of protecting her, but at the same time damaging internal organs.

5. Stress. If the person with Lupus genes felt stressed psychologically, his immune system activates to protect him, and at the same time damaging internal organs.

In short, Lupus is activated soon as one's immune system's activates. And the factors that cause the activation of the normal immune system, are the same factors that activates the abnormal immune system which we call "Lupus."

So, to control the Lupus activity, one's immune system should be controlled too. This is the reason why the doctors gave me immunosuppressant drugs. These drugs suppressed my immune system thus minimizing the attack of Lupus.

Lupus Attacked Me When I Was Stressed

Just like what I have said already, even if I was diagnosed of SLE or Lupus only in 2016, but I already had noticed its symptoms way back 2009, after I gave birth to our first child, which we thought that those symptoms were just another illnesses.

And my most stressful time was when my husband lost his business in 2012, thus losing his income too. I saw how depressed was my husband at that time, and I feel the pain of how he was badly hurt by that incident. I got sick, but I thought it was just another illness not a symptom of Lupus activity.

In 2013, after I gave birth to our second child, I got sick again, and I thought that that was another new illness not a symptom of Lupus activity.

As time goes by, my health condition had worsen. I couldn't grip something because the joints in my fingers hurt. I had knees and ankles problems. Got strange allergies. And I feel tired easily.

And then on January 2016, I got a problem in breathing due to internal abdominal pain. At first, the diagnose was Nephritis. And then it was upgraded to Nephrotic Syndrome. When all those illnesses that I had before manifested in July 2016 at that same time, the diagnose was finally raised to SLE or Lupus.

Lupus Made Me...

That's how Lupus attacked me. It made me suffer, but I am not blaming anyone. I consider it the gift of GOD to me. It made me special. It made me stronger than before.

It made me poorer than before (in terms of material wealth), but it made me rich of LOVE. Lupus made me feel the presence of God in my life.

God is really good to me!

My Immune System is My Friend and My Enemy

Normally, our immune system is our friend. It protects us from harm. It frees us from invaders.

But for us Lupus patients or anyone with autoimmune illness, our immune system is not just our friend, but our enemy too. As a friend, it protects us from foreign bodies like bacteria, virus, fungi, parasites, dusts, or anything that are not part of our bodies, including transplanted organ. It also attacks our own cells that became zombies like cancer cells and those cells where the foreign bodies attached themselves, so that the good cells will be protected.  As an enemy, it attacks our own good cells and it will not stop attacking us until we die.

In other words, I, as a Lupus patient, have an abnormal immune system that attacks my kidneys (that's why I have nephritis), lungs (enlarged lungs), heart (enlarged heart), and my blood (chronic anemia). In other Lupus patients' case, their immune systems attack their pancreas (so they have diabetes), and other organs... the worst case is when the attack is made against one's brain (patients will suffer from seizure and other brain damage including paralysis).

This illness is not contagious.  So, you don't have to worry if I am near your, sit besides you or talk with you. Don't be bothered if I am always wearing face mask (I just want to be protected from possible infection because, currently, my immune system is compromised or being turned less active). 

In explaining my illness to other people and in order for them to understand the nature of my illness, my husband always compares me to a car with factory defects. But the car can be brought back to the sales agent for replacement, but he couldn't or don't have the courage to return me to my parents. What I mean is that this abnormality in my immune system might be present in me since I was born. It is possible that I got this abnormality from one of my parents, and that particular parent got this abnormality from one of his or her parents too. It is also possible that my siblings (my brothers and sister) and my children, also my nephews and nieces, have this abnormality too. In short, Lupus is our clan's wealth... It is our friend and enemy.

So, if you are related to me in consanguinity, then you might have this abnormality too. But you don't have to worry, because it doesn't immediately activate itself. According to the experts, STRESS is the triggering factor in the activation of this abnormality.

Itago Mo Ako Sa Iyong Puso

Just want to share this story written by my husband. I found it in his files, and I think it is worth sharing.  ITAGO MO AKO SA IYONG PUSO...