27 February 2008
Friends have always teased that I have a tendency to become a hypochondriac. And I somewhat agree. I have conjured in my head countless of medical conditions and critical illnesses which, if had any semblance of truth to them, would have made me a permanent mainstay in hospitals.
When I was around 6 years old, I suddenly surprised my parents because for 2 days, I couldn’t walk! It feels like the muscles in my legs were paralyzed. Then after a few days, my legs were back to normal. I read in an article that sometimes, lupus patients feel this kind of temporary debilitating conditions.
When I was 9 years old, I thought that I was going to die, after learning that Julie Vega died of unknown reasons. I saw her a month before she died, so I felt a very strong connection towards her. I had fainting spells and felt dizzy all the time. So when she died, I imagined myself to suffer the same fate as her. I think that was just anemia.
When I was a freshman in college, I thought that I had parkinson’s disease (remember this, Rozie?). I had problems controlling mild twitching in my legs. I read about twitching, and came across pakinson’s disease. So I assumed that I had this disease. Looking back, I think it was a lupus induced condition. Now, I feel this kind of sensation all the time, especially at night.
In 2006, in Penang, I thought I had vertigo. I had these dizzying spells all the time. I never thought that this was just lupus-induced anemia.
Last year, I was telling Marjo and Gibo that I might have carpal tunnel syndrome – my fingers hurt so much that it was very difficult for me to work in front of the computer and type. I never realized that I was having lupus arthritis already.
A few months ago, I’ve felt this stabbing/pricking sensation on the soles of my feet. It feels like my bones were being stabbed by a really big needle. But I ignored this sensation, I had too much lupus-related diseases to think about. I should have not ignored the pain.
Today, I learned that I have osteopenia. It is the condition where one’s bone density is below the normal or the ideal. This condition, when untreated, usually leads to osteoporosis. Usually the following people are at risk of having osteopenia:
- thin people (not me)
- steroid users (that’s me)
- those with eating disorders (is overeating considered a disorder?)
- inactive lifestyle (no comment)
- smokers (ahhh… I’m a quitter!)
- excessive drinkers (again, I’m a reformed woman)
So my doctor prescribed more medicines for my bones.
Grabe, kakapagod na to ha! Pahinga naman muna ako...
Wednesday, February 27, 2008
Wednesday, February 20, 2008
Anak ng tutchang!
20 February 2008
When I had the flare in July, my hair stated falling. It was as if my floor (which is actually tiled white) had a black carpet. I had to sweep the floor at least 3 times a day so as not to accumulate balls of hair. And those of you who know how thick and long my hair strands are, I know you can just imagine how it looked.
So after 2 months of excessive falling hair, suddenly my thick mane became so limp, dry and thin. The chemo drug didn’t help. It was not only the hair in my head that fell off, but also hair on my legs and arms. Now, this is not really a problem. Imagine, I didn’t have to shave my legs for months! How convenient!
But in January, my hair started growing. Now this is really good news! It means my lupus flare is starting to “de-flare”, if there is such a word hehehe. Finally, after months of expensive medication, I can say that I am back to the shaving world. Now, I have to shave my legs every other day. Okay, once a week, since I don’t go out on dates anyways.
I really don’t want to complain. But I just want to say that it is not fun to watch my hair grow. My head is full of tutchang now! Anak ng tutchang! (Note: Tutchang, the irritatingly small growing hair rebelliously sticking out of your head). I look like Simba, the lion king, especially in the morning, then all the tutchangs are sticking out in all their glory.
So I went to the parlor a few days ago, and asked the hairstylist to tame my mane. But alas, Mr Reggie (the tri-colored-hair-fashionista-hairstylist) told me that he cannot do anything about my tutchang, and that I should just let it grow. But he didn’t let me step out of the salon without me purchasing this ridiculously overpriced Loreal anti-frizz serum. I really hope all my tutchangs will be tamed by this magic serum.
All’s better actually, I can’t complain. I just got back from yet another consultation with my nephrologist. She told me that the tests results are better, yay! The protenuria (protein leak) is gone, and the hematuria (blood in urine) is less – from +3 to +2. The anemia’s gone, my blood’s normal. The cholesterol level is normal, bordering on high. My minor hair fall (after I learned about the taxes that I have to pay) was stress-induced, and is thankfully, not a flare.
So there, will update you soon on my tutchangs :)
When I had the flare in July, my hair stated falling. It was as if my floor (which is actually tiled white) had a black carpet. I had to sweep the floor at least 3 times a day so as not to accumulate balls of hair. And those of you who know how thick and long my hair strands are, I know you can just imagine how it looked.
So after 2 months of excessive falling hair, suddenly my thick mane became so limp, dry and thin. The chemo drug didn’t help. It was not only the hair in my head that fell off, but also hair on my legs and arms. Now, this is not really a problem. Imagine, I didn’t have to shave my legs for months! How convenient!
But in January, my hair started growing. Now this is really good news! It means my lupus flare is starting to “de-flare”, if there is such a word hehehe. Finally, after months of expensive medication, I can say that I am back to the shaving world. Now, I have to shave my legs every other day. Okay, once a week, since I don’t go out on dates anyways.
I really don’t want to complain. But I just want to say that it is not fun to watch my hair grow. My head is full of tutchang now! Anak ng tutchang! (Note: Tutchang, the irritatingly small growing hair rebelliously sticking out of your head). I look like Simba, the lion king, especially in the morning, then all the tutchangs are sticking out in all their glory.
So I went to the parlor a few days ago, and asked the hairstylist to tame my mane. But alas, Mr Reggie (the tri-colored-hair-fashionista-hairstylist) told me that he cannot do anything about my tutchang, and that I should just let it grow. But he didn’t let me step out of the salon without me purchasing this ridiculously overpriced Loreal anti-frizz serum. I really hope all my tutchangs will be tamed by this magic serum.
All’s better actually, I can’t complain. I just got back from yet another consultation with my nephrologist. She told me that the tests results are better, yay! The protenuria (protein leak) is gone, and the hematuria (blood in urine) is less – from +3 to +2. The anemia’s gone, my blood’s normal. The cholesterol level is normal, bordering on high. My minor hair fall (after I learned about the taxes that I have to pay) was stress-induced, and is thankfully, not a flare.
So there, will update you soon on my tutchangs :)
Wednesday, February 13, 2008
Are you aware?
14 February 2008
A few weeks ago, the LUISA Project (a Lupus awareness advocacy project) launched the Lupus Awareness Week. A fellow-lupie (Lenina Tujan) told me about this a few months back, but I totally forgot about it – blame it on my foggy brain.
It was Mai who sent me a text message that a tv channel covered the launching of the event, and that the lupus patients were out in the sun, dancing in the streets. Wow! That’s a sight, especially for us lupies, who shudder at the sight of sunlight.
I am very thankful to RxMen (seen every Wednesdays at Channel Q11) for also covering the event, and featuring the story of some lupies. I wanted to send a message to Dr Jai, a college orgmate, and also one of the hosts, and thank them for the story.
Watching the feature last night, I can’t help but cry seeing the lupus patients from all ages, from all walks of life. The spokesperson for the LUISA project is a Cojuangco. Lucky her, she can afford to buy the expensive medicines. But seeing the other lupus patients, it is evident that they could not even afford steroids (which is very cheap), the miracle drug for us lupies.
This valentine’s day, I would like to tell you about my love-hate relationship with Lupita. I sometimes call her “the wolf” – on days when I feel tired and beaten, when I can’t even think straight, when all my muscles and joints ache. But I also call her “a butterfly” – on days when I realize that I am very lucky, that I am loved, that I am strong.
I am sharing with you a poem sent by Tanya. I love this poem, salamat Tanya for sharing this. I would like to share it with all of you.
*Message of the Hopi Elders of Arizona....
" We have been telling the people that this is the Eleventh Hour.
Now you must go back and tell the people that this is the Hour.
And there are things to be considered.
Where are you living? What are you doing?
What are your relationships? Are you in the right relation?
Where is your water? Know your garden.
It is time to speak your truth
Create your community. Be good to each other.
And do not look outside yourself for the leader.
This could be a good time!
There is a river flowing now very fast
It is so great and swift that there are those who will be afraid.
They will try to hold onto the shore.
They will feel they are being torn apart and they will suffer greatly.
Know the river has its destination.
The elders say we must let go of the shore, and push off and into the river,
Keep our eyes open, and our head above the water.
See who is in there with you and Celebrate.
At this time in history, we are to take nothing personally. Least of all ourselves.
For the moment that we do, our spiritual growth and journey comes to a halt.
The time of the lone wolf is over, Gather yourselves!
Banish the word struggle from your attitude and your vocabulary.
All that you do now must be done in a sacred manner
And in celebration.
We are the ones we've been waiting for..."
I will have another round of lab work-ups and check up on Monday. Will keep you updated for the results. Let’s hope it’ll all be better.
Happy valentine’s day. Remember that you are loved. Stay happy!
A few weeks ago, the LUISA Project (a Lupus awareness advocacy project) launched the Lupus Awareness Week. A fellow-lupie (Lenina Tujan) told me about this a few months back, but I totally forgot about it – blame it on my foggy brain.
It was Mai who sent me a text message that a tv channel covered the launching of the event, and that the lupus patients were out in the sun, dancing in the streets. Wow! That’s a sight, especially for us lupies, who shudder at the sight of sunlight.
I am very thankful to RxMen (seen every Wednesdays at Channel Q11) for also covering the event, and featuring the story of some lupies. I wanted to send a message to Dr Jai, a college orgmate, and also one of the hosts, and thank them for the story.
Watching the feature last night, I can’t help but cry seeing the lupus patients from all ages, from all walks of life. The spokesperson for the LUISA project is a Cojuangco. Lucky her, she can afford to buy the expensive medicines. But seeing the other lupus patients, it is evident that they could not even afford steroids (which is very cheap), the miracle drug for us lupies.
This valentine’s day, I would like to tell you about my love-hate relationship with Lupita. I sometimes call her “the wolf” – on days when I feel tired and beaten, when I can’t even think straight, when all my muscles and joints ache. But I also call her “a butterfly” – on days when I realize that I am very lucky, that I am loved, that I am strong.
I am sharing with you a poem sent by Tanya. I love this poem, salamat Tanya for sharing this. I would like to share it with all of you.
*Message of the Hopi Elders of Arizona....
" We have been telling the people that this is the Eleventh Hour.
Now you must go back and tell the people that this is the Hour.
And there are things to be considered.
Where are you living? What are you doing?
What are your relationships? Are you in the right relation?
Where is your water? Know your garden.
It is time to speak your truth
Create your community. Be good to each other.
And do not look outside yourself for the leader.
This could be a good time!
There is a river flowing now very fast
It is so great and swift that there are those who will be afraid.
They will try to hold onto the shore.
They will feel they are being torn apart and they will suffer greatly.
Know the river has its destination.
The elders say we must let go of the shore, and push off and into the river,
Keep our eyes open, and our head above the water.
See who is in there with you and Celebrate.
At this time in history, we are to take nothing personally. Least of all ourselves.
For the moment that we do, our spiritual growth and journey comes to a halt.
The time of the lone wolf is over, Gather yourselves!
Banish the word struggle from your attitude and your vocabulary.
All that you do now must be done in a sacred manner
And in celebration.
We are the ones we've been waiting for..."
I will have another round of lab work-ups and check up on Monday. Will keep you updated for the results. Let’s hope it’ll all be better.
Happy valentine’s day. Remember that you are loved. Stay happy!
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