The butterfly had landed once again…

August 2, 2010 was my 9th year anniversary of being diagnosed with Lupus. I dreaded for this day, for it was a constant reminder that my life took a sudden drift nine years ago and the struggle of having this chronic illness haunts me day after day.

Everything was going well. I am starting to think that I am living a normal life once again. For almost a year, lupus was silent and I am only thankful, that I was able to do the things that I love to do. Yes, I tried to be careful, I tried not to disturb lupus, I tried, I hoped and I prayed.

August 2, 2010, just like any other Sunday morning in my household, everyone was busy getting ready for Sunday Morning Worship service. I woke up early and prepared my visual aids for my Sunday School Pre-School Class, I studied the powerpoint presentation for that morning worship service and starts to dress up. After breakfast, I was feeling a pain in my back shoulder and I started to feel weak and dizzy. I told my mother that I think I needed to rest and asked her to call someone to relieve me with my duties at church. She starts to worry and I tried to calm her down and told her that I just probably lack sleep and rest. So I went back to my room and fell asleep. I woke up early that afternoon with an upset stomach, I thought I was just having diarrhea and then fever starts and the last thing I remembered was collapsing in my bathroom floor, my brother carrying me and my mother shouting like crazy asking for help, neighbors came in and carried me downstairs and our pastor rushed me to the hospital. I woke up in the emergency room, hooked again with several tubes in my body, needles were everywhere and all I can do was cry….

Why again?? lupus when will you leave me alone!!!

I am so angry, I am scared but mostly I am just sad!

Sad that I will have to go through all the medical procedures again, the physical pain doesn’t matter much, I already learned to accept all the bitter pain that came along the needles, and everything else but knowing that my family will be again be burdened with me was a lot more disturbing that what I am feeling. I know that we will need a lot of money to support my medical expenses and quite frankly we are running out of options. Then the results of the lab came, 34 hemoglabin I might as well died that day (again), my blood pressure ranging from 50-60 and my heartbeat is on alarming stage. Doctors said I needed a blood transfusion right away and Efrex injection to stabilize my hemoglabin, and thank you for all the people that sustained me once again. The endless battle continues and I still try to stay optimistic and hopeful that God is always there for me. I need to be firm and put my trust on Him, otherwise I don’t think I will have the strength to go on.

But this recent attack of the lupus flare, got me thinking… made me realize the cruelty of my reality that lupus may forever be a part of me and no matter how careful I can be, it will find a way to harm me and it’s a reality of that uncertainty that makes me sad even more…

Yes, the butterfly had landed once again, and looks like it’s gonna stay at least hopefully not for long!

I miss having a day like this… where you can just sit on the grass under the sun, stare at the wonderful works of nature and be alone with my thoughts… I can’t remember the last time I had a day like that, but it could be nice and I think I can use a bit of thinking…

My life right now is like a roller coaster ride.. it’s exciting yet terrifying. You can have a bit of fun with the anticipation of fear. I used to plan everything, I live on schedules but with lupus I have to live with a lot of uncertainty. There are times that I feel like I’m missing out on life, that my dreams had been shattered and my life took a 360 degree turn when I was diagnosed with this illness, there’s just too many things that I would like to happen in my life and although a lot of times I try to stay optimistic about everything, there are still days that I wish I didn’t have lupus, maybe, just maybe I would have been a different person too, but thinking about it I like me right now and yes, there were times that I play the “what if” game in my head but in the end, I am happy being me and I just know that there’s a time for everything… God’s says so and I just need to just wait on Him! Have a great week everyone!

Today marks the first death anniversary of Michael Jackson. Imagine that a year already passed, time flies by so fast and I still remember the day that the news of his death was all over the TV, radio and the internet. Everybody was shocked and suddenly people had forgotten all the bad controversies he got himself into and everyone just remembered how he had changed the pop culture and his contribution to the world through his music is just beyond compare. I am not really a fan, I just love his songs and I grow up mostly dancing in his songs. It was only later that I appreciate the songwriter that he was, his songs were full of substance, of meaning and always trying to speak to the world.

I was lucky enough to see him perform during his concert in the Philippines way back 1996. I was a college student then and the experience was something I will never forget. My only regret was during that time cameras were not too handy and the memory of that night will only be in my mind. He was such an exceptional performer and such a great loss to the music scene. There were also some rumors that he too, suffered from Lupus. Too bad, he was “gone too soon…” This video is my most favorite song of Michael Jackson, the lyrics is just remarkable. You are missed, MJ!

Lady Gaga Tested For Lupus

I came across this article from a fellow lupus friend from Facebook. I am not a fan of Lady Gaga, I like her music though but I just cannot appreciate her fashion sense, maybe I’m a bit old for that. But I have to admit that she is extremely popular especially with the younger crowds and since her songs are upbeat you can even find yourself snapping or even dancing to her songs. But if this interview was true, and she is in fact insinuating that Lupus is hereditary because it can be passed on to her by her aunt and the term “lupus runs in the family” then she is spreading wrong information again on the disease.

Lupus may be genetic, but it is not hereditary… It cannot be passed on with your child or anyone in your family. It is not even contagious, only the person who has lupus is in pain. Lady Gaga can help on the lupus awareness but she needs to be informed correctly.

My heart is broken once again… and the sad thing is I am the only one who knows about it. I cannot even tell anyone that I am hurting, I cannot let anyone know that I am in pain simply because no one knows that I am deeply in love with this man. Yes, I have a secret love… an unspoken feeling towards someone and I would rather die than to reveal to anyone that I am in love with him. I know I shouldn’t be feeling this, I know I shouldn’t even love him at all but what can I do, this foolish heart of mine just can’t be stopped. I honestly tried to avoid it, tried to ignore it, I even distanced myself from him but the further I try to stay away the more my feelings for him intensify. I’ve been in this road before, in fact I’ve been in this road so many times now but my stubborn heart just couldn’t learn. Love isn’t love until it is shared by two but I know in my heart that my love for him is enough for both of us. I did not expect us to be a couple, I did not even dream about us being together, although I wanted him to be THE ONE… my heart isn’t just ready to dream big, just to be close to him was more than enough for my happiness.

I had my share of little happiness, little cute moments together that maybe doesn’t mean a thing for him but means a lot for me. I thought that would be enough… Loving him in silence, I thought I’ll be alright with that but lately I am starting to realize that I shouldn’t be punishing myself in loving someone who can’t love me back. He may be the man of my dreams but clearly I am not the girl in his and I really believe that true love knows when it’s time to hold on and when it’s time to let go. Sad as it may seem but this is the time to let him go… maybe, just maybe this is just not the love for me just yet. Should I lose hope and turn my back from love? There’s a part of me that says, “Yes, I should ” that I should give up on love but I just know that I cannot… I am simply just a hopeless romantic and love will be on its way for me again very soon…

Days like these don’t happen all the time,
I’m usually quite jolly and really fine.
I enjoy the days where it doesn’t hurt to walk
When I’m in a good mood, and okay to talk.

But days like these, come very few.
When I hate being me and I wish to start anew.
Where I don’t have to worry about what’s going on
And feeling this ache doesn’t mean something’s wrong.

Today I am lonely that I have Lupus,
And I pray that no one had to go through this.
That a cure will be possible in a pill.
Instead of heading to more doctors for more crazy bills.

I know I shouldn’t worry about it at all.
But it’s hard when symptoms start staking ten feet tall.
When my hands swell to where I can’t even write.
Or when my legs hurt so much, I can’t sleep through the night.

When it hurts to see the sun shining down on me.
Or to walk a few steps and sit under a tree.
To simply open a can of soda to get a simple drink.
Or when it hurts so badly, I can’t even think.

I know everyday is not always going to be like this.
I just wish the bad days, would be the ones I would miss.
When I just feel like sleeping and doing nothing more.
And shutting everyone out, and locking the door.

But the sun goes down and the moon shines bright.
While God helps me through another restless night.
And even though these days may come and come again.
I know He will be with me, always holding me hand.

This month is lupus awareness month and it sometimes saddens me that the illness is still unknown to most people. Personally, I would like everyone to understand what lupus is all about so that I wont have to explain again and again what  I am going through, it is very draining. Lupus remains to be a most misunderstood illness of all, simply because it is impossible to know if you have lupus or to recognize anyone who is suffering from lupus that is why it is called the invisible disease but it helps to know somehow if you are having these common symptoms and you might just avoid any serious lupus flare attack in the future.

• Achy joints with swelling
• Extreme fatigue
• Unexplained rashes
• Unexplained rashes that turn to sores, then scar
• Butterfly malar rash across nose and cheeks
• Anemia
• Pleurisy (pain in the chest when deep breathing)
• Ulcers inside the mouth and nose
• Photosensitivity
• Cardiopulmonary disorders (heart/lung)

If  you are somehow experiencing these, better consult a doctor right away. An early prevention is always better than a cure.

My grandmother celebrated her 90th birthday a year ago, she still looks fabulous right?

But lately she’s been complaining about her ears, she said she’s having a hard time hearing things clearly now but that is understandable she is after all getting old. We had to install doorbells around our ancestral house so that she can be aware if there are people around her. It is such a blessing that she remains healthy in her old age and I just pray that she continues to be well.

It’s been quite awhile. There’s just so many things that happened in the past months that I decided to go on temporary hiatus but all is well, at least for now and I’m back doing what I love most… blogging!

Since I got sick with lupus most of my plans didn’t really happen, one of the most difficult thing to accept with having to live with lupus that you are bound with uncertainties and there is no way that you can really plan for your day because lupus could simply ruin it in an instance. I used to be sad about it, I am the kind of person who likes to be organized and I like to plan all the time but imagine my dismay knowing that I have to rely on lupus just to get through my day. One of the things that I didn’t plan was enrolling myself in an online university which I later on benefited to have landed a dream job that I have now. It was being sick with lupus, alone most of the time at home and spending most of my waking hours online, made me think that I should use my time in a more useful way which is to do study. Who could have thought that technology could bring you an online nursing degree it is just amazing that you don’t have to sacrifice leaving your job to go to school, you can even decide to study in your own phase.

We may think that our plans for our lives are the best but we must realize that sometimes God has the best laid plans for us, and it’s always good!