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Lupus Blogs Hopping

There are times that I couldn't sleep immediately at night because my brain is reminiscing those days when all those who cared for me and have great concern of me visited me, texted me, and called me up just to let me know that they're there ready to support me.

Then after that, I just make use of the time by blog hopping to the blogs maintained by Lupus Fighters around the world. I actually enjoyed this activity... reading their thoughts on their experiences being part of the Lupus community. And I just realized that there lots of them blogging like me.

Toni Braxton, Finished a Tour

Toni Michelle Braxton who is a singer and songwriter and seven-time Grammy winner successfully finished her "As Long As I Live" tour even if she's suffering from Lupus symptoms. She called her illness , the "Stupid Lupus." (news report)

In 2010, Ms Braxton revealed for the first time in an interview that she's suffering the symptoms of SLE or Lupus. She told her audience how she struggled with the disease especially during its flare-up like what happened in 2012 and 2016. (source)

I Salute The Fallen Lupus Fighters

Every time I hear a news about a fallen Lupus Fighter, I feel a little bit nervous.  For example, last December 2018, three of my fellow known Lupus Fighters in Eastern Visayas (Philippines) were fallen. And just this February 2019, another fighter, (Ma'am Kate Camagting) surrendered. I know them because they are members of the Eastern Visayas Lupus Warrior Group organized by a patient of one of the  Rheumatologist in Tacloban City. And I believe, that there are others who are defeated by Lupus day by day.

Fighters' defeat simply tells us that Lupus really kills. And not only this Lupus can kill us but the drugs used to control Lupus can cause death too to us in a  way that it will lower down our defense system against infection.

We have no choice but to face the fact that if we want to win against Lupus, we need to use the weapons that can kill us too. In other words, we, the Lupus Fighters, are engaged in a battle against Lupus using our weapons that can kill both Lupus and us (the fighters). As we attack Lupus, we are actually attacking our own too. So, in the end, we will be killed either by Lupus itself or by the weapons we used to attack Lupus.

That's how ironic it is to be a Lupus Fighter. That's why I am getting ready for the worst. And I hope I will be one of the lucky fighters who will be successful in suppressing Lupus without losing our own life.

Draining Resources

Just like what I already had told you, I am engaged on this fight against Lupus since 2016. The fight is not easy for us because we don't have the money for the medicines. You see, our income is only enough for our daily needs. So, in order to get hold of the medicines that I need, I am forced to have a series of loans from a bank, until I am no longer allowed to get another loan account.

When the Lupus flared up on July 2018, we were at the point of nowhere to run for, except to beg people to support us for this fight. And I am very much thankful, first to God, for giving you a generous heart and letting you feel pity (mercy) on me. And with your help and support, I am able to survive at least for seven months now. Thank you so much.

But as time goes by, my resources in fighting Lupus are fast draining too. I only have few armaments now and by a week or two, I will have no weapons at all. 

But NO..... I am wrong!

I still have one very powerful weapon and more ammunition for the weapon too. That "weapon" is my faith to God, and these "ammunition" are your love and support to me.

This is the reason why in my past article (Lupus and the Cure), I was talking about religion.  And If you are one of my friends at Facebook, you would have noticed already that I am always posting updates related to my religion.

I just couldn't separate my fight against Lupus from religion because I am actually getting strength from the words of God taught to us during the worship services we have on Thursdays and Sundays. And I am such lucky to be part of the flock of Christ in these last days in the Far East (Iglesia Ni Cristo), because every time we congregate to worship God, I always receive the words of God in the form of lessons taught to us by our Church Administration that suits my situation.

God is My Lone Hope

Lupus, just like what the doctors said, has no cure. It can be controlled but it has no cure. It means that if you have money, you can buy the needed medicines to control the illness. So, while being suppressed, Lupus is always there waiting for the right time to flare up, but at least with the right medicine, it is being controlled.

But in my case now, I think, it's different. As of the moment, I don't have the amount to purchase the medicines. The ones sponsored by the Hinunangan District Public Schools Employees Association (HDPSEA... Thank you very much) are almost gone. Without the right medicines to control this illness, Lupus will become an illness that has no cure and CAN'T be controlled.

Those fallen Lupus Fighters I mentioned above, before they tasted the defeat, they came first to the point of having a Lupus with no cure and can't be controlled, just because their resources were already drained.

 So now, It's like I am already at a dead-end and nowhere to go, and I will just wait for the time to be defeated by Lupus.... But, that is, if I have no faith to our God.

At least, now I still have a firm faith to our God Almighty... the only true God.... the Father of Christ our Lord.

I think, this is the will of God that I will come to a point that I have nothing to control the illness, so that I will hold firmly to my faith to Him. And on the right time, you will see, how God will heal me.

So, I will just hold firmly to my faith, and be healed. To God be the Glory!

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.

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