2007 was a good year. may 2008 be better for all of you.
may your heart be warmer w/ love,
your body be blessed with health,
your spirit be filled with peace,
your lips be full of genuine smile and laughter,
your life be full of contentment.
here's a toast to a better life, good health, prosperous endevours, and lasting love... you deserve it.
happy new year, everyone!
Monday, December 31, 2007
Sunday, December 23, 2007
Extra challenge
23 December 2007
I just got the best xmas present ever! I went to my nephrologists last week. And I just learned that my “tulo” aka protein leak is already gone! Yes, folks! According to my latest lab results, the albumin in my urine is now negative (from a maximum of +3).
However, I still have to continue with my medication since there is still RBC (red blood cells) in my urine (+3).
Another good news… my cholesterol level is now normal! Yahoo!!! Now, the greatest challenge will be how to maintain this during the xmas break. I was supposed to be on a diet still – low fat, low sodium and low protein diet. But given the nature of our xmas celebration, this is almost impossible to do. For the past 3 days, I’ve been having tummy aches – could this be dyspepsia, indigestion, overeating?
Good luck talaga sa akin!
Merry xmas everyone!
I just got the best xmas present ever! I went to my nephrologists last week. And I just learned that my “tulo” aka protein leak is already gone! Yes, folks! According to my latest lab results, the albumin in my urine is now negative (from a maximum of +3).
However, I still have to continue with my medication since there is still RBC (red blood cells) in my urine (+3).
Another good news… my cholesterol level is now normal! Yahoo!!! Now, the greatest challenge will be how to maintain this during the xmas break. I was supposed to be on a diet still – low fat, low sodium and low protein diet. But given the nature of our xmas celebration, this is almost impossible to do. For the past 3 days, I’ve been having tummy aches – could this be dyspepsia, indigestion, overeating?
Good luck talaga sa akin!
Merry xmas everyone!
Thursday, November 29, 2007
Foggy brain
29 November 2007
One of the complications of lupus is that you become foggy-brained – your brain becomes this hazy network of memories and ideas.
Some lupus patients have it really bad. One said that while driving, she had to pull over to call her friend. She needed to ask her friend where she was supposed to go.
My brain is not that foggy yet, although I have to admit that I noticed that cobwebs might have started to build up. Most of the time, I have to stop and think really hard to remember what I was planning to do or day. That is why my mobile phone’s calendar function is fully maximized. So as not to forget, I have to key in all appointments and activities that I intend to do. My friends always tease me for this. Every time my phone’s alarm goes off, they say that it’s to remind me to breathe.
I hope my brain don’t get too foggy that I forget to key in reminders in my mobile phone.
One of the complications of lupus is that you become foggy-brained – your brain becomes this hazy network of memories and ideas.
Some lupus patients have it really bad. One said that while driving, she had to pull over to call her friend. She needed to ask her friend where she was supposed to go.
My brain is not that foggy yet, although I have to admit that I noticed that cobwebs might have started to build up. Most of the time, I have to stop and think really hard to remember what I was planning to do or day. That is why my mobile phone’s calendar function is fully maximized. So as not to forget, I have to key in all appointments and activities that I intend to do. My friends always tease me for this. Every time my phone’s alarm goes off, they say that it’s to remind me to breathe.
I hope my brain don’t get too foggy that I forget to key in reminders in my mobile phone.
Wednesday, November 21, 2007
Yebah!
21 November 2007
Me so happy!!!
Today, I had another consultation with my Nephrologist at NKI. She told me that my kidneys are showing signs of improvement. The protein leak (albumin) in my urine is down to +1 (from +3). But of course, the ideal is 0 or negative. But at least, it’s slowly improving. Hopefully by next month, it would be negative.
Another cause for celebration? My steroids dose is down to 5mg! Imagine… from 50mg in July to 5mg after 4 months. Ang galing! Well, dapat lang… with all my expensive medicines!
I was having a light moment with my Nephro in Isabela (yes, I have 2 Nephros) about how expensive my medicines are (I spend roughly P1,400 per day!). He told me that some of his patients cannot even afford to buy steroids, which only costs P10 per day. I suddenly felt very privileged that I am able to buy medicines for my sustenance. Good thing Mercury Drugstore accepts credit cards. Although God knows how I’ll be able to pay my bills. But I could not complain. I am lucky… very lucky.
My NKI Nephro also reprimanded me. “Hija, watch your diet. You’re eating more.” Hahaha!!! Huling-huli! The lab results showed that my cholesterol level is still a bit high. I should really stay away from pork, beef, chocolates, ice cream, cakes, pastries… arghhh!!! No more yummy food. *wails*
But for the bad news, my doctor found more complications of lupus. I have anemia, plus I have nerve problems. So I need to take additional medicines. But hey, my kidneys are getting better… YEHEY!!!
Thanks for the prayers! Please continue praying for my complete recovery.
Me so happy!!!
Today, I had another consultation with my Nephrologist at NKI. She told me that my kidneys are showing signs of improvement. The protein leak (albumin) in my urine is down to +1 (from +3). But of course, the ideal is 0 or negative. But at least, it’s slowly improving. Hopefully by next month, it would be negative.
Another cause for celebration? My steroids dose is down to 5mg! Imagine… from 50mg in July to 5mg after 4 months. Ang galing! Well, dapat lang… with all my expensive medicines!
I was having a light moment with my Nephro in Isabela (yes, I have 2 Nephros) about how expensive my medicines are (I spend roughly P1,400 per day!). He told me that some of his patients cannot even afford to buy steroids, which only costs P10 per day. I suddenly felt very privileged that I am able to buy medicines for my sustenance. Good thing Mercury Drugstore accepts credit cards. Although God knows how I’ll be able to pay my bills. But I could not complain. I am lucky… very lucky.
My NKI Nephro also reprimanded me. “Hija, watch your diet. You’re eating more.” Hahaha!!! Huling-huli! The lab results showed that my cholesterol level is still a bit high. I should really stay away from pork, beef, chocolates, ice cream, cakes, pastries… arghhh!!! No more yummy food. *wails*
But for the bad news, my doctor found more complications of lupus. I have anemia, plus I have nerve problems. So I need to take additional medicines. But hey, my kidneys are getting better… YEHEY!!!
Thanks for the prayers! Please continue praying for my complete recovery.
Vampire
17 November 2007
A few weeks ago, I panicked because I felt numbness in my feet, especially my left foot. My rheumy (Rheumatologist) advised me to note every and all changes that I feel in my body. So being the hypochondriac that I am, I went to my Nephro to seek his advise. I suspected that the numbness was because of my kidney nephritis.
It turned out that I was having hypocalcemia – my body needs more calcium. One of the side effects of taking steroids is that the body becomes deficient in calcium. I noticed that aside from the pain in my joints and muscles, I also suddenly had very sensitive teeth. Previously, I had no problems eating and drinking cold food and drinks. But now, I feel sharp, stabbing pains or pangingilo. My doctor also warned that I should monitor my bones and eyes since steroid use also causes osteoporosis and cataract.
He prescribed Calcium supplement (1,000 mg). But when I told him that I am already taking Calcium with Vit D supplement, he said that my body might not be fully absorbing the calcium. He said that I should go out and bathe in the sunlight – early morning sun. He even commented that I looked pale, and that I should not live like a vampire.
A vampire… I think that’s what I’ve become the past months – taking in more liver in my diet (because of my anemia), shying away from the sun, hiding from people.
A few weeks ago, I panicked because I felt numbness in my feet, especially my left foot. My rheumy (Rheumatologist) advised me to note every and all changes that I feel in my body. So being the hypochondriac that I am, I went to my Nephro to seek his advise. I suspected that the numbness was because of my kidney nephritis.
It turned out that I was having hypocalcemia – my body needs more calcium. One of the side effects of taking steroids is that the body becomes deficient in calcium. I noticed that aside from the pain in my joints and muscles, I also suddenly had very sensitive teeth. Previously, I had no problems eating and drinking cold food and drinks. But now, I feel sharp, stabbing pains or pangingilo. My doctor also warned that I should monitor my bones and eyes since steroid use also causes osteoporosis and cataract.
He prescribed Calcium supplement (1,000 mg). But when I told him that I am already taking Calcium with Vit D supplement, he said that my body might not be fully absorbing the calcium. He said that I should go out and bathe in the sunlight – early morning sun. He even commented that I looked pale, and that I should not live like a vampire.
A vampire… I think that’s what I’ve become the past months – taking in more liver in my diet (because of my anemia), shying away from the sun, hiding from people.
Sunday, November 11, 2007
Shingle Bells
12 November 2007
Shingle bells… shingle bells… shingle all the way…
Nope, folks, it’s not a typographical error. I really meant shingle bells, no jingle bells. Aside from the fact that xmas is just around the corner, I was inspired to write about shingle bells because I recently just had the shingles. Yes!!! Herpes Zoster!
Now, before you react… I can just see your faces going, “What? Herpes? Where and how the hell did she get herpes?”. Let me tell you that Herpes Zoster or shingles is not transmitted through sexual intercourse.
According to internet sources and to my phenomenally lovely Rheumatologist (I should write an entry just about him), shingles gets its name from both the Latin and French words for belt or girdle and refers to girdle-like skin eruptions that may occur on the trunk of the body. The virus that causes chickenpox, the varicella zoster virus (VSV), can become dormant in nerve cells after an episode of chickenpox and later reemerge as shingles. Shingles arises in individuals who have already had chicken pox, and especially in people with weakened immune systems, such as the elderly or people receiving chemotherapy. Here’s one of the downside of taking chemo drug, along with the hair loss… sigh…
Initially, red patches of rash develop into blisters. Because the virus travels along the nerve to the skin, it can damage the nerve and cause it to become inflamed. This condition can be very painful. And it was indeed painful! I could not even walk, it was sooo irritatingly painful, it makes me cry. But thanks to Tramadol (Dolcet), I was able to somehow deal with the pain.
However, a few days ago, I noticed that the nerve pains wouldn’t go away, and Tramadol was not working that well. I had a few sleepless nights. I was feeling this weird sensation – a mixture of pain and itchiness which was crawling inside my nerves. It feels like a heavy centipede was inside my body, gnawing its way through my veins. So back to my doctor i went. He gave me a new prescription – Lyrica75. I found out that it was actually for epileptics, since it “relaxes” the nerves and prevents episodes of epilepsy. It really works, it actually worked too well since I got “really relaxed” – I had this high, dizzy, woozy feeling. It’s really a high, I tell you, it would actually make E obsolete in the market.
So there, another complication brought about by Lupus. I hope this is the last “complication update” I am going to write. I need rest from all these medical conditions.
Oh by the way, merry xmas. Have a shingle-bell-free week ahead.
Shingle bells… shingle bells… shingle all the way…
Nope, folks, it’s not a typographical error. I really meant shingle bells, no jingle bells. Aside from the fact that xmas is just around the corner, I was inspired to write about shingle bells because I recently just had the shingles. Yes!!! Herpes Zoster!
Now, before you react… I can just see your faces going, “What? Herpes? Where and how the hell did she get herpes?”. Let me tell you that Herpes Zoster or shingles is not transmitted through sexual intercourse.
According to internet sources and to my phenomenally lovely Rheumatologist (I should write an entry just about him), shingles gets its name from both the Latin and French words for belt or girdle and refers to girdle-like skin eruptions that may occur on the trunk of the body. The virus that causes chickenpox, the varicella zoster virus (VSV), can become dormant in nerve cells after an episode of chickenpox and later reemerge as shingles. Shingles arises in individuals who have already had chicken pox, and especially in people with weakened immune systems, such as the elderly or people receiving chemotherapy. Here’s one of the downside of taking chemo drug, along with the hair loss… sigh…
Initially, red patches of rash develop into blisters. Because the virus travels along the nerve to the skin, it can damage the nerve and cause it to become inflamed. This condition can be very painful. And it was indeed painful! I could not even walk, it was sooo irritatingly painful, it makes me cry. But thanks to Tramadol (Dolcet), I was able to somehow deal with the pain.
However, a few days ago, I noticed that the nerve pains wouldn’t go away, and Tramadol was not working that well. I had a few sleepless nights. I was feeling this weird sensation – a mixture of pain and itchiness which was crawling inside my nerves. It feels like a heavy centipede was inside my body, gnawing its way through my veins. So back to my doctor i went. He gave me a new prescription – Lyrica75. I found out that it was actually for epileptics, since it “relaxes” the nerves and prevents episodes of epilepsy. It really works, it actually worked too well since I got “really relaxed” – I had this high, dizzy, woozy feeling. It’s really a high, I tell you, it would actually make E obsolete in the market.
So there, another complication brought about by Lupus. I hope this is the last “complication update” I am going to write. I need rest from all these medical conditions.
Oh by the way, merry xmas. Have a shingle-bell-free week ahead.
Monday, November 5, 2007
Para sa iyo…
Originally posted on:
01 October 2007
***WARNING:
This will contain long and really sappy text. Not for the grouchy, jaded, bitter and those without any capacity for tenderness. I hope I made myself clear. Walang sisishan…
Recently, on a rainy night, the phenomenal dyosas had another gathering (more of a feast, actually) at the very magical kingdom of Matimtiman.
One of the dyosa’s magical tales made me reflect on how I show my appreciation for my friends and family. Especially now that I have been going through a lot, I would like to say “Salamat. Galing sa iyo ang lakas ko. Para sa iyo ito.”
For you...
Whose face i always see, high or low times. Thanks for bringing up angels who prayed that I might find my toad prince, who make me greeting cards, and who remind you to bring only low-salt food for me.
For you…
Who I never thought I could be really good friends with at the start. For your regular text messages. For showing interest by doing your own internet research about lupus. It’s been really helpful. For showing that you care.
For you…
Who never fails to give me pep talks. For making me realize that the Higher Being is really good, and that there will always be an endless abundance of loaves and fishes.
For you…
Who I know I can always count on, through thick and think. Whether I have the Class 4 Topak, since I know that you are topak yourself. Salamat, harhar!
For you…
Who made me realize that I can have a really good male friend. For trying to be my pimp. Sana maging successful ka, soon. Who told me that that when you’re 50, I should be 51. (liar! Magka-age tayo! Hahaha). By the way, I intend to live until I’m 70.
For you…
For being honest and telling me that you don’t know anything about lupus, but will continue to pray for me. Despite the distance, I know that you care. Tagal ng pinagsamahan eh. Thanks for your tips about going herbal and natural. By the way, I always drink yakult hehehe.
For you…
Who told me that life is indeed unfair. I greatly appreciate that, having someone tell me that my feelings (however irrational they may seem), are valid. Salamat sa bandana tips. By the way, I cut my hair really short.
For you…
Who taught me about medidation, healing oneself and visioning. It actually works! I hope you maintain your so-called “inner peace”.
For you…
Who, despite the distance, have conveyed your support through your blog. It made me cry. Hindi… ngumawa ako, ate! Sobra akong touched. Salamat! You have a gift with words. You should write a book… seriously!
For you…
Who never fails to make me laugh everytime we chat. Thanks for your tip about bodybuiling and steroids. My next goal: to become the next Jackie Lou Blanco! Hahaha!
For you…
And your inspirational stories about your sick sister. You gave me an insight on how it is to be on the other end, how it is to be a caregiver. You’re very strong. Your sister is lucky to have you.
For you…
Who never fails to show you care through food! Salamat, donya! Wag mo akong masyadong patabain hehehe. Palaguin ang business!
For you…
For the donya who braves the rain and the mountains just to attend the videoke party at my place. Next time, dapat kumanta ka.
For you…
Who even with your “bulutong” finds time to visit me. Thanks for being my vanity partner, mare.
For you…
Who told me that I can always count on you in times of need. I know that and I am indeed grateful.
For you…
Who volunteered to carry me up the stairs for a dvd marathon. Di ko kakalimutan yan, especially now that I have arthritis hehehe.
For you…
Who called and told me that although you don’t reply to my messages, that I am always in your thoughts. Salamat lagi sa mga medical advice eversince. You’re a real great doctor.
For you…
Who told me that you will always be there, and that I can count on you. A lot has changed. A lot of things happened. New relationships emerged. Old friendships were broken. But I know that there will be a special bond between us. Former alcoholics eh hehehe.
For you…
Who told me to “hold on”. Salamat. I didn’t expect you to read my emails. I know how crowded your inbox is. Salamat din, at sa akin mo ibebenta ang high tech DSLR mo hehehe.
For you…
Who gave me a lot of prodding and motivation to excel in what I do. Who never fails to remind me that I can do much more. Salamat, mother. You deserve all the good things in your life. Kisses to your new angel.
For you...
My colleague, my captive nurse, my kindred spirit. Salamat! Let’s take care of ourselves. Life is short, let’s live life. Let’s love life. Magpakita ka naman minsan.
01 October 2007
***WARNING:
This will contain long and really sappy text. Not for the grouchy, jaded, bitter and those without any capacity for tenderness. I hope I made myself clear. Walang sisishan…
Recently, on a rainy night, the phenomenal dyosas had another gathering (more of a feast, actually) at the very magical kingdom of Matimtiman.
One of the dyosa’s magical tales made me reflect on how I show my appreciation for my friends and family. Especially now that I have been going through a lot, I would like to say “Salamat. Galing sa iyo ang lakas ko. Para sa iyo ito.”
For you...
Whose face i always see, high or low times. Thanks for bringing up angels who prayed that I might find my toad prince, who make me greeting cards, and who remind you to bring only low-salt food for me.
For you…
Who I never thought I could be really good friends with at the start. For your regular text messages. For showing interest by doing your own internet research about lupus. It’s been really helpful. For showing that you care.
For you…
Who never fails to give me pep talks. For making me realize that the Higher Being is really good, and that there will always be an endless abundance of loaves and fishes.
For you…
Who I know I can always count on, through thick and think. Whether I have the Class 4 Topak, since I know that you are topak yourself. Salamat, harhar!
For you…
Who made me realize that I can have a really good male friend. For trying to be my pimp. Sana maging successful ka, soon. Who told me that that when you’re 50, I should be 51. (liar! Magka-age tayo! Hahaha). By the way, I intend to live until I’m 70.
For you…
For being honest and telling me that you don’t know anything about lupus, but will continue to pray for me. Despite the distance, I know that you care. Tagal ng pinagsamahan eh. Thanks for your tips about going herbal and natural. By the way, I always drink yakult hehehe.
For you…
Who told me that life is indeed unfair. I greatly appreciate that, having someone tell me that my feelings (however irrational they may seem), are valid. Salamat sa bandana tips. By the way, I cut my hair really short.
For you…
Who taught me about medidation, healing oneself and visioning. It actually works! I hope you maintain your so-called “inner peace”.
For you…
Who, despite the distance, have conveyed your support through your blog. It made me cry. Hindi… ngumawa ako, ate! Sobra akong touched. Salamat! You have a gift with words. You should write a book… seriously!
For you…
Who never fails to make me laugh everytime we chat. Thanks for your tip about bodybuiling and steroids. My next goal: to become the next Jackie Lou Blanco! Hahaha!
For you…
And your inspirational stories about your sick sister. You gave me an insight on how it is to be on the other end, how it is to be a caregiver. You’re very strong. Your sister is lucky to have you.
For you…
Who never fails to show you care through food! Salamat, donya! Wag mo akong masyadong patabain hehehe. Palaguin ang business!
For you…
For the donya who braves the rain and the mountains just to attend the videoke party at my place. Next time, dapat kumanta ka.
For you…
Who even with your “bulutong” finds time to visit me. Thanks for being my vanity partner, mare.
For you…
Who told me that I can always count on you in times of need. I know that and I am indeed grateful.
For you…
Who volunteered to carry me up the stairs for a dvd marathon. Di ko kakalimutan yan, especially now that I have arthritis hehehe.
For you…
Who called and told me that although you don’t reply to my messages, that I am always in your thoughts. Salamat lagi sa mga medical advice eversince. You’re a real great doctor.
For you…
Who told me that you will always be there, and that I can count on you. A lot has changed. A lot of things happened. New relationships emerged. Old friendships were broken. But I know that there will be a special bond between us. Former alcoholics eh hehehe.
For you…
Who told me to “hold on”. Salamat. I didn’t expect you to read my emails. I know how crowded your inbox is. Salamat din, at sa akin mo ibebenta ang high tech DSLR mo hehehe.
For you…
Who gave me a lot of prodding and motivation to excel in what I do. Who never fails to remind me that I can do much more. Salamat, mother. You deserve all the good things in your life. Kisses to your new angel.
For you...
My colleague, my captive nurse, my kindred spirit. Salamat! Let’s take care of ourselves. Life is short, let’s live life. Let’s love life. Magpakita ka naman minsan.
Sunday, November 4, 2007
May class ako, ikaw meron?
Originally posted on
25 September 2007
Yesterday, I was again at NKI, my favorite tambayan. I had more lab tests in the morning, and I had the doctor interpret the result of the renal biopsy in the afternoon. According to the results, I have Class 4 Global-Active Lupus Nephritis.
May class ang lupus ko! And it’s the most active kind. Talaga naman, kahit lupus ko, phenomenal! It’s considered in the advanced stage, and is the kind which is organ-threatening.
This also means that I will be needing BOTH steroids and immuno-supressive (chemo) drugs. Currently, I am taking Cellcept, a chemo drug which is taken orally. I need to go back to my Nephrologist after 2 weeks, to check if the medicine is working, and if I still need to have it through the IV. Sana naman hindi.
She also gave me 3 more additional medicines for my kidneys, and also for my heart. She is concerned that my kidneys are not responding too well to the medications, that's why she prescribed additional meds. Now, she is more confident of the medicines she is prescribing since the biopsy showed the exact condition of my kidneys, and which areas to treat. Grabe, sari-saring colors and medicine ko – white, green, pink, yellow. And different sizes and shapes too.
She also asked me to maintain my medicines for my cholesterol. It has gone down (from 555 to 200++), but she wants to bring it down some more. The normal is 120++, I think.
Now for the good news…
The results are fairly positive. Wala pa naman masyado damage sa kidneys. This just means that I will not be needing dialysis. YEBAH! My doctor hopes that my body will respond to the medicines, and that the damage can be managed and reversed. As of today, I am still dependent on steroids and the chemotherapy drug. Let’s hope and pray that it works and that I’ll be on remission the soonest.
Tomorrow, I will go to a Rheumatologist, since I'm experiencing arthritis. Really painful at the knees and joints! And sometimes, I also have leg cramps on both legs – another effect of lupus.
Let's hope that after 2 weeks, my body will cooperate so that some meds will be taken off the list. I'm so confused now with all the medicines I'm taking.
Mahaba na to. I will email you again for additional updates.
25 September 2007
Yesterday, I was again at NKI, my favorite tambayan. I had more lab tests in the morning, and I had the doctor interpret the result of the renal biopsy in the afternoon. According to the results, I have Class 4 Global-Active Lupus Nephritis.
May class ang lupus ko! And it’s the most active kind. Talaga naman, kahit lupus ko, phenomenal! It’s considered in the advanced stage, and is the kind which is organ-threatening.
This also means that I will be needing BOTH steroids and immuno-supressive (chemo) drugs. Currently, I am taking Cellcept, a chemo drug which is taken orally. I need to go back to my Nephrologist after 2 weeks, to check if the medicine is working, and if I still need to have it through the IV. Sana naman hindi.
She also gave me 3 more additional medicines for my kidneys, and also for my heart. She is concerned that my kidneys are not responding too well to the medications, that's why she prescribed additional meds. Now, she is more confident of the medicines she is prescribing since the biopsy showed the exact condition of my kidneys, and which areas to treat. Grabe, sari-saring colors and medicine ko – white, green, pink, yellow. And different sizes and shapes too.
She also asked me to maintain my medicines for my cholesterol. It has gone down (from 555 to 200++), but she wants to bring it down some more. The normal is 120++, I think.
Now for the good news…
The results are fairly positive. Wala pa naman masyado damage sa kidneys. This just means that I will not be needing dialysis. YEBAH! My doctor hopes that my body will respond to the medicines, and that the damage can be managed and reversed. As of today, I am still dependent on steroids and the chemotherapy drug. Let’s hope and pray that it works and that I’ll be on remission the soonest.
Tomorrow, I will go to a Rheumatologist, since I'm experiencing arthritis. Really painful at the knees and joints! And sometimes, I also have leg cramps on both legs – another effect of lupus.
Let's hope that after 2 weeks, my body will cooperate so that some meds will be taken off the list. I'm so confused now with all the medicines I'm taking.
Mahaba na to. I will email you again for additional updates.
Saturday, November 3, 2007
Muli…
Originally posted on:
23 September 2007
No, I’m not going to write about a song. I’m going to write about my new “lupie alaga”. Yes, lupie friends, I have Lupus Arthritis. Muli… merong na namang isang sakit na dulot ng lupus. I just experienced the pain last week. Ibang klase pala talaga! Ang sakit sobra! :(
I can’t do long driving. Typing for more than an hour is a real pain. Walking up the stairs is hell. Bending my knee is something I haven’t tried for the last couple of days. I’m so afraid of moving any ligament from my knee.
I will go to my Rheumatologist on Wednesday. I am really looking forward to any medicine which could help with the pain.
23 September 2007
No, I’m not going to write about a song. I’m going to write about my new “lupie alaga”. Yes, lupie friends, I have Lupus Arthritis. Muli… merong na namang isang sakit na dulot ng lupus. I just experienced the pain last week. Ibang klase pala talaga! Ang sakit sobra! :(
I can’t do long driving. Typing for more than an hour is a real pain. Walking up the stairs is hell. Bending my knee is something I haven’t tried for the last couple of days. I’m so afraid of moving any ligament from my knee.
I will go to my Rheumatologist on Wednesday. I am really looking forward to any medicine which could help with the pain.
Friday, November 2, 2007
Laman Loob
Originally posted on:
19 September 2007
Lupus is such a complicated disease. I have to monitor all my organs since it attacks the body's own cells.
My Rheumatologist advised me to monitor the following organs/systems -- kidneys, heart, lungs, liver, eyes, reproductive organs, blood, central nervous sytem, muscles and joints, skin.
So far, here's the status:
1. kidneys - pending renal biopsy results
2. heart - for consultation with Cardiologist tom
3. lungs - clear, yey! kayo, mga smokers, how's your lungs?
4. liver - clear! monthly monitoring needed, yey uli! kayo, mga alcoholics?
5. eyes - consultation with Ophalmologist to be scheduled on friday
6. reproductive organs - consultation to be scheduled 2 weeks from now
7. blood - no plans yet. just had shots last month and blood transfusion last week
8. central nervous sytem - need to look for a Neurologist. any suggestions?
9. muscles and joints - for consultation with Rheumatologist on the 26th
10.skin - for consultation tom
looks like i'll be the lupie queen of the hospitals. dumdidum...
19 September 2007
Lupus is such a complicated disease. I have to monitor all my organs since it attacks the body's own cells.
My Rheumatologist advised me to monitor the following organs/systems -- kidneys, heart, lungs, liver, eyes, reproductive organs, blood, central nervous sytem, muscles and joints, skin.
So far, here's the status:
1. kidneys - pending renal biopsy results
2. heart - for consultation with Cardiologist tom
3. lungs - clear, yey! kayo, mga smokers, how's your lungs?
4. liver - clear! monthly monitoring needed, yey uli! kayo, mga alcoholics?
5. eyes - consultation with Ophalmologist to be scheduled on friday
6. reproductive organs - consultation to be scheduled 2 weeks from now
7. blood - no plans yet. just had shots last month and blood transfusion last week
8. central nervous sytem - need to look for a Neurologist. any suggestions?
9. muscles and joints - for consultation with Rheumatologist on the 26th
10.skin - for consultation tom
looks like i'll be the lupie queen of the hospitals. dumdidum...
Thursday, November 1, 2007
My New Tambayan
Originally posted on:
13 September 2007
Don’t you just miss hanging out in your org tambayan? Like what you usually do during college?
Now, I have a new tambayan… National Kidney and Transplant Institute (NKI). For the past month, I’ve been to that place at least 2 times in a week. I’ve explored the area from the cafeteria, to the doctors’ clinics to the laboratory to the patients’ ward.
Previously, during my gallstone-lap chole episode, Far Eastern University Hospital (FEU) was my tambayan.
I actually like NKI. I like the ambiance. From my 2nd floor room (when I was admitted for biopsy), I can see trees and sometimes, even birds flying around. And to think it’s just a few meters away from East Ave! They even renovated the rooms. The big private room I got was really pleasant, spacious and clean.
I just got out of NKI yesterday. And I’m supposed to go back on the 22nd for more post biopsy lab tests. I can’t wait!
13 September 2007
Don’t you just miss hanging out in your org tambayan? Like what you usually do during college?
Now, I have a new tambayan… National Kidney and Transplant Institute (NKI). For the past month, I’ve been to that place at least 2 times in a week. I’ve explored the area from the cafeteria, to the doctors’ clinics to the laboratory to the patients’ ward.
Previously, during my gallstone-lap chole episode, Far Eastern University Hospital (FEU) was my tambayan.
I actually like NKI. I like the ambiance. From my 2nd floor room (when I was admitted for biopsy), I can see trees and sometimes, even birds flying around. And to think it’s just a few meters away from East Ave! They even renovated the rooms. The big private room I got was really pleasant, spacious and clean.
I just got out of NKI yesterday. And I’m supposed to go back on the 22nd for more post biopsy lab tests. I can’t wait!
Wednesday, October 31, 2007
bampira ako
my other blogsige is called "bampira-ako". see:
http://bampira-ako.blogspot.com/2006/02/sino-ang-bampira.html
i never understood my curiosity about vampires, but now i understand. maybe my body was telling me that i am actually destined to be a vampire -- afraid of the sun, skin dry and scorched from sun exposure, going out at night.
i will posting in this site some random thoughts about this vampire of a disease called lupus. i will be calling it The Lupie Diaries.
enjoy the adventure!
http://bampira-ako.blogspot.com/2006/02/sino-ang-bampira.html
i never understood my curiosity about vampires, but now i understand. maybe my body was telling me that i am actually destined to be a vampire -- afraid of the sun, skin dry and scorched from sun exposure, going out at night.
i will posting in this site some random thoughts about this vampire of a disease called lupus. i will be calling it The Lupie Diaries.
enjoy the adventure!
Thursday, October 4, 2007
The Wolf Revealed
I’ll be blunt… I have lupus.
Systemic lupus erythematosus (also called lupus or SLE) is a disease where a person's immune system attacks and injures the body's own organs and tissues. Almost every system and organ of the body can be affected by SLE – kidneys, heart, lungs, eyes, skin, blood, etc. Right now, it has affected my kidneys – I have lupus nephritis. My kidneys are failing to keep in the protein in my system, and it gets flushed out through the urine. And this causes edema (pagmamanas) in my ankles, face and eyes. My kidney biopsy showed that I have Class 4 Global-Active Lupus Nephritis. It’s the most aggressive kind, my doctors say.
SLE is a chronic disease. No known cure, no known causes. There are a lot of questions still unanswered, a lot of research that still needs to be done, a lot of individuals who have to endure this dreaded illness until a cure is found.
I don’t know if I am still on a shock, or I’m in denial, but I don’t feel much about my condition. I don’t hate nor embrace it. I just know it’s there. I feel nothing… I am hollow as a reed.
It was only on July 19 that my doctor gave his diagnosis. It’s barely been more than 2 months, but I have read a lot of things about lupus and its complications. I have seen and felt a lot of changes both physically, emotionally and psychologically because of lupus.
Lupus is Latin for wolf, and 'erythro' is derived from a Greek word for "red." All explanations originate with the reddish, butterfly-shaped malar rash that the disease classically exhibits across the nose and cheeks. In various accounts, some doctors thought the rash resembled the pattern of fur on a wolf's face. In other accounts doctors thought that the rash, which was often more severe in earlier centuries, created lesions that resembled wolf bites or scratches.
That is why more often in articles and written works, Lupus is associated with the elusive wolf, lurking amidst the forest, clandestinely and successfully stalking the victim’s innocent body, and then finally, attacks when one is unaware and vulnerable. These attacks are called “flares”. Lupus is also frequently associated with the butterfly, because of the malar rash that appears on the face. I also have this, but I thought this was just an allergic reaction to heat and sunlight.
I had my first flare end of June, after a week of pure bliss in El Nido. Sunlight triggers lupus flares, and that was what exactly happened. I’ve already felt some of the symptoms since January 2007 (arthritis, swelling of ankles and face, loss of hair, fatigue, fever, dizziness), but kept on ignoring them. What made it worse I think, is that I really pushed myself to the limit – working under pressure, frequent travels and field work, and poor diet and sleeping habits. I went to very hot and humid countries (Africa, Indonesia, Singapore, India) in a span of 3 months. Then went to Palawan and Bukidnon even when I was feeling sick already.
After Bukidnon, I literally thought I was going to die. I can barely get out of the bed. I was sore and aching all over, even in places that I thought never existed. I had fever, dizziness, headaches, abdominal pain, excessive hair loss, cracked lips, painful mouth and gum sores, loss of appetite, nausea and vomiting, diarrhea, muscle pains, joint pains. Name it, and I’ve felt it. I was bloated and swollen from my nephritis. I was stuck in the bed for 2 days, eating almost nothing, sleeping most of the day. I was just waiting for the moment when I would be free of all the pain, and I was ready to die in peace. During these grueling days, I made it a point not to bolt the double-lock of my door such that friends, family or concerned neighbors would be able to enter the condo with keys from the outside. It was that bad.
Now, I have finally managed my flare by taking high dose steroids and chemotherapy drugs. I feel better now, no more pains and aches. But still, I easily tire. Also, steroids is a very toxic medication since there are a lot of side effects – hyperacidity, bloating and water retention (I have stretch marks now!), excessive appetite (I’m hungry every hour!), moon-shaped face (think of Arnold Clavio), bloated eyelids, face, abdomen, and ankles. I cannot frequent crowded areas since I am prone to infection. Also, I am VERY emotional these days. Yes, Prednisone (steroid brand name) is a friend, but also a very exacting one. Right now, I am taking a total of 24 pills per day! For my kidneys, for the heart, for cholesterol, for my muscle and bones, and for my lupus.
Also, as a result of SLE, I also have arthritis now. It’s really hell going up and down the stairs. My knees are really weak and sore at times. I get leg and hand cramps when I overuse my muscles. And it’s not only my knees and joints that are affected. My skin is very sensitive to sunlight. I get sunburned easily. I easily bruise and get really ugly scars.
My doctors (yes, I have a lot) tell me that I have to take it slow. And that I have to change my lifestyle. No stress, sleep at 10pm, healthy meals, mild stretching and exercise, low salt intake.
Like I said earlier, I’ve no problem with taking things slow. I guess I really want and need this break from the toxicity of my life. I am now working on a consultancy project with an NGO, thus have a lot of free time. I plan to write a lot of my thoughts in a blog site especially dedicated to my journey with Dyosa Lou (lupus). But I refuse to be a useless blob here at my parents house (yes, I’ll be based in Isabela until my flare is gone. I’ve abandoned my little enclave) thus I plan to look for other projects. Morever, Dyosa Lou is a very high-maintenance resident. I spend nearly P1,500 per day for my maintenance medicines! My savings are bleeding to death… really fast.
During this journey, I know that I will stumble, fall, take the wrong turns and eventually get lost. But I know that with the help of my family and friends, I can find my way back. I know that they will cushion me when I fall, and push me when I feel too weak to even open my eyes. I know that there will be more challenges in the future. But I am positive that their strength will make me struggle on and conquer the wolf. Because now that the wolf has revealed its elusive self, the butterfly will soar.
4:25 pm
13 Aug
Santiago City
//ed ver: 04 October 4, 2007
Systemic lupus erythematosus (also called lupus or SLE) is a disease where a person's immune system attacks and injures the body's own organs and tissues. Almost every system and organ of the body can be affected by SLE – kidneys, heart, lungs, eyes, skin, blood, etc. Right now, it has affected my kidneys – I have lupus nephritis. My kidneys are failing to keep in the protein in my system, and it gets flushed out through the urine. And this causes edema (pagmamanas) in my ankles, face and eyes. My kidney biopsy showed that I have Class 4 Global-Active Lupus Nephritis. It’s the most aggressive kind, my doctors say.
SLE is a chronic disease. No known cure, no known causes. There are a lot of questions still unanswered, a lot of research that still needs to be done, a lot of individuals who have to endure this dreaded illness until a cure is found.
I don’t know if I am still on a shock, or I’m in denial, but I don’t feel much about my condition. I don’t hate nor embrace it. I just know it’s there. I feel nothing… I am hollow as a reed.
It was only on July 19 that my doctor gave his diagnosis. It’s barely been more than 2 months, but I have read a lot of things about lupus and its complications. I have seen and felt a lot of changes both physically, emotionally and psychologically because of lupus.
Lupus is Latin for wolf, and 'erythro' is derived from a Greek word for "red." All explanations originate with the reddish, butterfly-shaped malar rash that the disease classically exhibits across the nose and cheeks. In various accounts, some doctors thought the rash resembled the pattern of fur on a wolf's face. In other accounts doctors thought that the rash, which was often more severe in earlier centuries, created lesions that resembled wolf bites or scratches.
That is why more often in articles and written works, Lupus is associated with the elusive wolf, lurking amidst the forest, clandestinely and successfully stalking the victim’s innocent body, and then finally, attacks when one is unaware and vulnerable. These attacks are called “flares”. Lupus is also frequently associated with the butterfly, because of the malar rash that appears on the face. I also have this, but I thought this was just an allergic reaction to heat and sunlight.
I had my first flare end of June, after a week of pure bliss in El Nido. Sunlight triggers lupus flares, and that was what exactly happened. I’ve already felt some of the symptoms since January 2007 (arthritis, swelling of ankles and face, loss of hair, fatigue, fever, dizziness), but kept on ignoring them. What made it worse I think, is that I really pushed myself to the limit – working under pressure, frequent travels and field work, and poor diet and sleeping habits. I went to very hot and humid countries (Africa, Indonesia, Singapore, India) in a span of 3 months. Then went to Palawan and Bukidnon even when I was feeling sick already.
After Bukidnon, I literally thought I was going to die. I can barely get out of the bed. I was sore and aching all over, even in places that I thought never existed. I had fever, dizziness, headaches, abdominal pain, excessive hair loss, cracked lips, painful mouth and gum sores, loss of appetite, nausea and vomiting, diarrhea, muscle pains, joint pains. Name it, and I’ve felt it. I was bloated and swollen from my nephritis. I was stuck in the bed for 2 days, eating almost nothing, sleeping most of the day. I was just waiting for the moment when I would be free of all the pain, and I was ready to die in peace. During these grueling days, I made it a point not to bolt the double-lock of my door such that friends, family or concerned neighbors would be able to enter the condo with keys from the outside. It was that bad.
Now, I have finally managed my flare by taking high dose steroids and chemotherapy drugs. I feel better now, no more pains and aches. But still, I easily tire. Also, steroids is a very toxic medication since there are a lot of side effects – hyperacidity, bloating and water retention (I have stretch marks now!), excessive appetite (I’m hungry every hour!), moon-shaped face (think of Arnold Clavio), bloated eyelids, face, abdomen, and ankles. I cannot frequent crowded areas since I am prone to infection. Also, I am VERY emotional these days. Yes, Prednisone (steroid brand name) is a friend, but also a very exacting one. Right now, I am taking a total of 24 pills per day! For my kidneys, for the heart, for cholesterol, for my muscle and bones, and for my lupus.
Also, as a result of SLE, I also have arthritis now. It’s really hell going up and down the stairs. My knees are really weak and sore at times. I get leg and hand cramps when I overuse my muscles. And it’s not only my knees and joints that are affected. My skin is very sensitive to sunlight. I get sunburned easily. I easily bruise and get really ugly scars.
My doctors (yes, I have a lot) tell me that I have to take it slow. And that I have to change my lifestyle. No stress, sleep at 10pm, healthy meals, mild stretching and exercise, low salt intake.
Like I said earlier, I’ve no problem with taking things slow. I guess I really want and need this break from the toxicity of my life. I am now working on a consultancy project with an NGO, thus have a lot of free time. I plan to write a lot of my thoughts in a blog site especially dedicated to my journey with Dyosa Lou (lupus). But I refuse to be a useless blob here at my parents house (yes, I’ll be based in Isabela until my flare is gone. I’ve abandoned my little enclave) thus I plan to look for other projects. Morever, Dyosa Lou is a very high-maintenance resident. I spend nearly P1,500 per day for my maintenance medicines! My savings are bleeding to death… really fast.
During this journey, I know that I will stumble, fall, take the wrong turns and eventually get lost. But I know that with the help of my family and friends, I can find my way back. I know that they will cushion me when I fall, and push me when I feel too weak to even open my eyes. I know that there will be more challenges in the future. But I am positive that their strength will make me struggle on and conquer the wolf. Because now that the wolf has revealed its elusive self, the butterfly will soar.
4:25 pm
13 Aug
Santiago City
//ed ver: 04 October 4, 2007
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