Attending SPPMPC Annual Assembly

Today is the annual assembly of the Sts Peter and Paul Multi-Purpose Cooperative held in the municipal gym.I actually don't want to attend like this considering my health but I need to do do it because I want to receive something as incentives to members who will attend such activities.

Early this morning, I went to the venue of activities to register. So I need to stand for a while in a queue during this warm morning. This initial activity actually makes me feel bored and tired.

Yes, I am tired. I think, it is because my hemoglobin level is too low again. You see, I failed to follow the instruction of my doctor. I was told to take three immunosuppressants (HCQS, Prednisone and MyCept) but I could only afford to buy two of them (HCQS and Prednisone). And I was also told to take these immunosuppressants one tablet each three times a day, but I only take one tablet once a day. To raise my hemoglobin level, my doctor told me to take a certain injection once a week, but I couldn't because I couldn't afford to buy such injection.

Actually, I don't have sponsors anymore since the month of March. So, I don't have any option but to focus all my trust to God. If God permits that even without meds I can survive this illness, then that will be a great miracle to happen. God's miracle in my life is my only hope.

Lupus, Ice and Water

This post has nothing to do with my illness, Lupus. I just want to compile information that I learn after doing an information-search about making Ice Cream.

Why am I doing a research about making Ice Cream?

Well, I already had told you that my family is currently struggling to survive. We already had spent a lot of money for my therapy. I already took loans and am already at the point that I couldn't take another loan account because my net pay is already too low to have another loan account.

So, my husband decided that he should find a job for us, and this is the only way. But, he doesn't want to abandon his offices in the Church of Christ (Iglesia Ni Cristo) and for him, have a job, as if he is an employee might force him to abandon his Church offices and responsibilities. And then he suggested that it would be better if he will open a small business, instead... like doing a habal-habal (motorcycle taxi) services or selling own-made ice cream (sorbetes style).

And as part of the start of the business, he did a research about Ice Cream making. And part of the procedure is the use of ice and salt.

So, I wondered: "why use the salt to the ice?" These are the result of my little research:
  1. What's the effect of salt to the ice? Salt lowers the freezing temperature of the water. If the temperature of the ice is 30 degree Fahrenheit (for example), after adding salt, the freezing temperature will be come 29-down degree Fahrenheit. With the salt added to the ice, the salt after in contact with the liquid surface of the ice will melt first (dissolves) and make the liquid salty. Salted liquid film of the ice because its freezing point has been lowered already, causes the ice to melt down causing to have more liquid that also causes more salt to dissolve... the effect goes on and on, until all ice in a container or in an area melt. So, this is the reason why in the snowy places, they apply salt into the snow or ice to melt them down faster. This is also the reason why making artificial rain uses salt as part of the procedure.
  2. How does we compare the melting ice without salt and melting ice with salt? The ice without the salt melts because the air around it is warmer. The ice tends to absorb the warmth around it that causes it to melt. However, ice with salt melts faster that the ice without salt not because of the warmth around it but because its freezing temperature has been lowered down by the salt.
  3. What's the point of using salt in making Ice Cream? Salt lowers the freezing point of the water, right? So, the ice with salt will be much colder than the ones without ice, thus causing the ice cream to hardened faster. So, the water with salt needs more time to freeze compared to the liquid without salt. So, if you put a bag of water without ice into the cold water with salt, the water with salt remains liquid but the water without salt inside the bag freezes fast.

Voclosporin for Lupus Nephritis Patient Like Me

In my two years after being diagnosed of Lupus Nephritis, the immunosuppressant drugs given to me are Predisone, Mythel Prednisolone, Hydro Cortisone, Hydroxycloroquine Sulfate, Mycophenololate Mofetil and Cyclophosphamide. I can say that they are all effective based on the medical program administered by our Doctors.

Just today, while reading the news, I found a new drug, an immunosuppressant drug which is effective in treating Lupus Nephritis patients. And this is the Voclosporin.

Voclosporin of Aurinia Pharmaceuticals  is a calcineurin inhibator.

Calcineurin, on the other hand, according to the Wikipedia is "a calcium and calmodulin dependent serine/threonine protein phosphatase (also known as protein phosphatase 3, and calcium-dependent serine-threonine phosphatase). It activates the T cells of the immune system and can be blocked by drugs." In other words, it is an enzymes that activates the T cells of the immune system which then signals the the nearby cells to activates them in order to attack the invaders. The activation of cells as a way to attack invaders is called inflammation.

So, Voclosporin when taken by a Lupus patient, combines with the Calcineurin that will cause to the change in structure of calcineurin. The structurally changed calcineurin will not be detected by the T cells thus T cells will not activate and there will be no inflammation to happen. 

According to a news article about Voclosporin, "70 percent achieved partial remission after 24 weeks of treatment and 33 percent achieved complete remission. After 48 weeks, 49 percent of patients on voclosporin, 23.7 mg twice a day, achieved complete remission, compared to 24 percent of those given a placebo. "


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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!

Attending SPPMPC Annual Assembly

Today is the annual assembly of the Sts Peter and Paul Multi-Purpose Cooperative held in the municipal gym.I actually don't want to att...