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!

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!

What a greater way to relax is to have a view of the pond fountains it really looks nice, soothing and refreshing. Have a great weekend, everyone!

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.