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!
Wednesday, October 31, 2007
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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