14 August 2009
I can’t believe that it’s almost half a year since my last update. I didn’t update my blog, simply because I didn’t have any new updates.
I’m still on medications – almost the same medicines which I took some 12 months ago. The only difference is that I went back to taking Cellcept, so medication’s still expensive.
Fortunately, there are no new complications of Lupus. My nephrologist says that I am almost on remission, except that I still have hematuria. And as what she previously said, I still need to lose weight. Hayyy…
Friday, August 14, 2009
Wednesday, February 4, 2009
Kamusta ka?
It's been more than a month since my last entry. And a lot of friends have been asking me how I am.
This will be like an update from my end.
I am ok, healthwise. All my lab results are almost back to normal - except for my urinalysis, cholesterol and triglycerides and calcium.
There's still blood in my urine, which means that I am not on full remission.
My cholesterol and triglyceride levels are still high, which means I have to watch what I eat (less carbo and fats) and that I should also exercise.
My calcium level is low, which means I have to double my dose of calcium supplements.
Other than that, I'm fine. I'm actually gaining some pounds. Since 6 months ago, I gained more than 10 lbs. (I really need to lose weight before my next check-up).
Another good news is that my monthly medication cost is down to 10k! Yahoo!
Ikaw, kamusta ka?
This will be like an update from my end.
I am ok, healthwise. All my lab results are almost back to normal - except for my urinalysis, cholesterol and triglycerides and calcium.
There's still blood in my urine, which means that I am not on full remission.
My cholesterol and triglyceride levels are still high, which means I have to watch what I eat (less carbo and fats) and that I should also exercise.
My calcium level is low, which means I have to double my dose of calcium supplements.
Other than that, I'm fine. I'm actually gaining some pounds. Since 6 months ago, I gained more than 10 lbs. (I really need to lose weight before my next check-up).
Another good news is that my monthly medication cost is down to 10k! Yahoo!
Ikaw, kamusta ka?
Thursday, December 25, 2008
Thursday, November 13, 2008
My Only U
14 November 2008
i learned from an online lupus forum that My Only U (a movie by Star Cinema) is actually a movie about a young woman with lupus. it stars Toni Gonzaga & Vhong Navarro.
the movie is a drama comedy love story where the woman (Toni), is expected to die at age 25. Toni was diagnosed with the disease Lupus by her doctor. Toni wears a wig in the movie which might be to portrayed hair loss, one of the many symptoms of the disease.
a friend also told me that the trailer shows a clip where Toni is prevented from going out of the house, "dahil may lupus ka"(because you have lupus).
i heard that there is also a mention about Toni dying at a young age because there is "a curse" in the family.
i have not seen the movie (and i'm not even sure if i want to see it, but i have seen the short trailer), but i just hope this movie helps the lupus advocacy, and not bring more confusion about the disease.
being a lupus patient, i am slighted with the insinuations in the movie (or from the trailer). i just hope that the movie makes it crystal clear that:
1. lupus is not a curse. we are not cursed.
2. not all lupus patients are dying. i can personally attest that you will still see me within the next few years. i hate it when people look at me as if i'm dying.
3. lupus is not contagious. i overheard an old lady from the province... "kailangan i-cremate yung pinsan ko, kasi namatay sya sa lupus, baka makahawa kasi" (her remains [her cousin's] has to be cremated because she has lupus, and might be contagious).
4. lupus patients can still live a normal life. we can still enjoy life (but of course, with less stress and sun exposure).
for more information about lupus, you can visit the following sites:
http://www.luisaproject.org
http://www.lupus.org
http://lupus.webmd.com/default.htm
i learned from an online lupus forum that My Only U (a movie by Star Cinema) is actually a movie about a young woman with lupus. it stars Toni Gonzaga & Vhong Navarro.
the movie is a drama comedy love story where the woman (Toni), is expected to die at age 25. Toni was diagnosed with the disease Lupus by her doctor. Toni wears a wig in the movie which might be to portrayed hair loss, one of the many symptoms of the disease.
a friend also told me that the trailer shows a clip where Toni is prevented from going out of the house, "dahil may lupus ka"(because you have lupus).
i heard that there is also a mention about Toni dying at a young age because there is "a curse" in the family.
i have not seen the movie (and i'm not even sure if i want to see it, but i have seen the short trailer), but i just hope this movie helps the lupus advocacy, and not bring more confusion about the disease.
being a lupus patient, i am slighted with the insinuations in the movie (or from the trailer). i just hope that the movie makes it crystal clear that:
1. lupus is not a curse. we are not cursed.
2. not all lupus patients are dying. i can personally attest that you will still see me within the next few years. i hate it when people look at me as if i'm dying.
3. lupus is not contagious. i overheard an old lady from the province... "kailangan i-cremate yung pinsan ko, kasi namatay sya sa lupus, baka makahawa kasi" (her remains [her cousin's] has to be cremated because she has lupus, and might be contagious).
4. lupus patients can still live a normal life. we can still enjoy life (but of course, with less stress and sun exposure).
for more information about lupus, you can visit the following sites:
http://www.luisaproject.org
http://www.lupus.org
http://lupus.webmd.com/default.htm
Thursday, October 16, 2008
Bilin
15 October 2008
I went to my lady nephrologists earlier. She said that the lab results are not bad. “It’s not really what I wanted to see, but it’s ok”, those were her words.
She said that apart from my hematuria (blood in my urine), I seem to be managing my lupus very well.
So I became VERY happy, ecstatic to be specific. Maybe she saw the sparkle in my eyes, and realized that I was ready to go back to my old life, because she suddenly said, in a very serious tone, and while looking at my eyes intently, “Hija, this does not mean that you will abuse your body. Bawal magpuyat at magpagod. Baka naman magwala ka.”
Can you believe that?! Ako… magwawala? No way! Ang bait ko eh, hehehe
Actually, I wanted to kiss her on the cheek and hug her. I felt her motherly love for me. At least I know that she cares for her patients.
I really needed to hear that fro her. Since I have a tendency to live my life to the fullest, as a friend would say. I work hard, and play even harder.
So yun… kabilin-bilinan ng lola, wag nang uminom ng cervesa… among other things.
Buti na lang reformed woman na ako. I have new addictions now. That’s another juicy story altogether.
From Shot List, Kalayaan Ave, QC
(free wifi, yehey!)
I went to my lady nephrologists earlier. She said that the lab results are not bad. “It’s not really what I wanted to see, but it’s ok”, those were her words.
She said that apart from my hematuria (blood in my urine), I seem to be managing my lupus very well.
So I became VERY happy, ecstatic to be specific. Maybe she saw the sparkle in my eyes, and realized that I was ready to go back to my old life, because she suddenly said, in a very serious tone, and while looking at my eyes intently, “Hija, this does not mean that you will abuse your body. Bawal magpuyat at magpagod. Baka naman magwala ka.”
Can you believe that?! Ako… magwawala? No way! Ang bait ko eh, hehehe
Actually, I wanted to kiss her on the cheek and hug her. I felt her motherly love for me. At least I know that she cares for her patients.
I really needed to hear that fro her. Since I have a tendency to live my life to the fullest, as a friend would say. I work hard, and play even harder.
So yun… kabilin-bilinan ng lola, wag nang uminom ng cervesa… among other things.
Buti na lang reformed woman na ako. I have new addictions now. That’s another juicy story altogether.
From Shot List, Kalayaan Ave, QC
(free wifi, yehey!)
Saturday, July 5, 2008
Of Freedoms and Anniversaries
05 July 2008
I am finally free!
I am free from the negative side effects of prednisone (steroids). My nephorologist finally asked me to stop taking the toxic drug. As I’ve written in my previous blog entries, I have Osteopenia (mild form of osteoporosis). Also, my face and back have suffered from acne. And all these are because of the steroid use.
Now, my nephro told me that we’ll try to remove steroids from my cocktail of medicines. Hopefully, my nephritis will not worsen. I’ll know next month. I’ll keep you updated.
I’m free… thanks to your prayers.
On another positive note, it’s been a year since I declared myself a quitter. It was on July 03, 2007 that I smoked an entire cigarette stick.
Anniversary ko… ano gift mo?
I am finally free!
I am free from the negative side effects of prednisone (steroids). My nephorologist finally asked me to stop taking the toxic drug. As I’ve written in my previous blog entries, I have Osteopenia (mild form of osteoporosis). Also, my face and back have suffered from acne. And all these are because of the steroid use.
Now, my nephro told me that we’ll try to remove steroids from my cocktail of medicines. Hopefully, my nephritis will not worsen. I’ll know next month. I’ll keep you updated.
I’m free… thanks to your prayers.
On another positive note, it’s been a year since I declared myself a quitter. It was on July 03, 2007 that I smoked an entire cigarette stick.
Anniversary ko… ano gift mo?
Wednesday, June 4, 2008
Happy!
04 June 2008
Note:
I promised an old friend that I won’t write sad or depressing entries. She told me that she never reads my blogs anymore because it makes her sad. This is for you, Maj. I hope my title got you to open my mail :)
Wow! It’s been 2 months since my last entry. I actually don’t know what to write for updates. Everytime someone asks me how I am, here’s my standard answer: “Ok lang, getting better”.
And that is really true. With each monthly check-up at NKI, my nephrologist tells me that I’m getting better, but not enough to declare a remission.
She wants to maintain my meds for my kidneys to be completely healed. As of today, here’s the list of my daily meds:
Pritor - 1 tab
Pred 5 - ½ tab
Cellcept - 2 tabs
Lipitor 80 - ½ tab
Ezetrol - 1 tab
Trental - 3 tabs
Aspirin - 1 tab
Calcium with Vit D - 1 tab
Ascorbic Acid - 1 tab
Vit B1, B6, B12 - 1 tab
Iberet w/ Folic - 2 tabs
Bonviva - once a month
So I am indeed getting better, thanks to my muti-colored, multi-shaped, multi-sized meds.
Note:
I promised an old friend that I won’t write sad or depressing entries. She told me that she never reads my blogs anymore because it makes her sad. This is for you, Maj. I hope my title got you to open my mail :)
Wow! It’s been 2 months since my last entry. I actually don’t know what to write for updates. Everytime someone asks me how I am, here’s my standard answer: “Ok lang, getting better”.
And that is really true. With each monthly check-up at NKI, my nephrologist tells me that I’m getting better, but not enough to declare a remission.
She wants to maintain my meds for my kidneys to be completely healed. As of today, here’s the list of my daily meds:
Pritor - 1 tab
Pred 5 - ½ tab
Cellcept - 2 tabs
Lipitor 80 - ½ tab
Ezetrol - 1 tab
Trental - 3 tabs
Aspirin - 1 tab
Calcium with Vit D - 1 tab
Ascorbic Acid - 1 tab
Vit B1, B6, B12 - 1 tab
Iberet w/ Folic - 2 tabs
Bonviva - once a month
So I am indeed getting better, thanks to my muti-colored, multi-shaped, multi-sized meds.
Friday, April 4, 2008
Foam
04 April 2008
I’m foaming… nope, not in the mouth.
My urine is foamy again… sigh. (Apologies for the faint hearted and those with sensitivities to gross things.)
The past few days, I’ve been noticing that my urine is foamy again. This is not good news. It would have been good news if it was Joy Dishwashing Liquid (sa konting patak… mabisa pa din ang bula). But for us with kidney problems, this usually is a sign of nephritis and protein leak.
I’m blaming it on the food here in isabela. My kidneys are being punished here. It’s being tortured everyday with the slabs of meat that are always on the table. How can I refuse? The thick and juicy pieces of meat are practically jumping out from the plate straight to my mouth. I swear these evil things are still alive!
Sigh… what can I say… Isabelanos (is that what we’re called?) are meat-eaters. They can devour a whole lechong baka if given a chance. So you can just imagine the torture and the punishment that my kidneys underwent.
Low protein diet… yeah right!
I’m going to my nephro (mommy doctor from NKI) next week. I am pretty sure that I will hear these words again… “Hija, watch your diet.”
But I will tell her the truth, she has to know… there are evil things in isabela. Slabs of meat come alive here, and makes their way into our mouths, forcing themselves into people’s throats and stomachs. Tsk tsk… .those evil things.
Times like these? Who you gonna call? Ghost busters! Tarantaran… Tarantaran… who you gonna call?... (fading)
On a serious note, your prayers are again needed. Let’s all hope that the ghost busters do their work and bust that protein leak and hematuria (blood) away from my urine. I’ve been sick the past days – muscles hurting, head aches, dizziness. I hope this is nothing. Salamat uli!
I’m foaming… nope, not in the mouth.
My urine is foamy again… sigh. (Apologies for the faint hearted and those with sensitivities to gross things.)
The past few days, I’ve been noticing that my urine is foamy again. This is not good news. It would have been good news if it was Joy Dishwashing Liquid (sa konting patak… mabisa pa din ang bula). But for us with kidney problems, this usually is a sign of nephritis and protein leak.
I’m blaming it on the food here in isabela. My kidneys are being punished here. It’s being tortured everyday with the slabs of meat that are always on the table. How can I refuse? The thick and juicy pieces of meat are practically jumping out from the plate straight to my mouth. I swear these evil things are still alive!
Sigh… what can I say… Isabelanos (is that what we’re called?) are meat-eaters. They can devour a whole lechong baka if given a chance. So you can just imagine the torture and the punishment that my kidneys underwent.
Low protein diet… yeah right!
I’m going to my nephro (mommy doctor from NKI) next week. I am pretty sure that I will hear these words again… “Hija, watch your diet.”
But I will tell her the truth, she has to know… there are evil things in isabela. Slabs of meat come alive here, and makes their way into our mouths, forcing themselves into people’s throats and stomachs. Tsk tsk… .those evil things.
Times like these? Who you gonna call? Ghost busters! Tarantaran… Tarantaran… who you gonna call?... (fading)
On a serious note, your prayers are again needed. Let’s all hope that the ghost busters do their work and bust that protein leak and hematuria (blood) away from my urine. I’ve been sick the past days – muscles hurting, head aches, dizziness. I hope this is nothing. Salamat uli!
Wednesday, February 27, 2008
Hypochondriac
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...
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 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 :)
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