The Lupus Chronicles Plus

Hydroxychloroquine: A New Friend

2011-07-30T11:15:00.003+08:00

My doctor gave me prescription for HCQS during my last check-up...and then asked me to get clearance from an opthalmologist before taking it. I just looked up the drug in Wikipedia and here is what I got:

Hydroxychloroquine is an antimalarial drug, sold under the trade names Plaquenil,Axemal(In India), Dolquine, and Quensyl, also used to reduce inflammation in the treatment of rheumatoid arthritis (see disease-modifying antirheumatic drugs) and lupus. The adult starting dose is 400 milligrams one to two times daily, for several weeks or months, depending on the reaction. This may be reduced to 200 from 400 milligrams per day for maintenance. With systemic lupus, it is especially useful in relieving skin inflammation, hair loss, oral sores, fatigue and joint pain as well as preventing relapse.
One of the most serious side effects is a toxicity in the eye[11] (generally with chronic use), and requires regular screening even when symptom-free. The daily safe maximum dose for eye toxicity can be computed from one's height and weight using this calculator.

And here, is why I needed to get clearance from an eye-doctor first, also from Wikipedia. Hmmm:

Toxicity from hydroxychloroquine may be seen in two distinct areas of the eye, the cornea, and the macula. The cornea may become affected (relatively commonly) by an innocuous vortex keratopathy and is characterized by whorl-like corneal epithelial deposits. These changes bear no relationship to dosage and are usually reversible on cessation of hydroxychloroquine.
The macular changes are potentially serious and are related to dosage and length of time taking hydroxychloroquine. Established maculopathy is characterized by moderate reduction of visual acuity and an obvious "bulls eye" macular lesion. End stage maculopathy is characterized by severe reduction in visual acuity and severe atrophy of the retinal pigment epithelium.

Remembering my Cytoxan Pulse Treatments

2011-07-30T10:49:00.002+08:00

"You were much easier to treat when you were 16."

So said my doctor when we were discussing options for my treatment during my last check-up. She was of the opinion that I need to go through the (Cytoxan) pulsing treatment again. I was the opinion that it should not interfere with my work schedule, if we really do need to do it. When I first went through pulse treatment in 1993-1994, I was only 15-16 years old, and so my mother easily committed me to the treatment. Now, I'm 33, working a high-tier role in an I.T. company, sole breadwinner for the family -- locking me down for a series of treatments meant checking my calendar, at a minimum.

Yes, it was much easier back then. The treatment was done in my doctor's office. We settled first for a much lower-priced medicine, Endoxan if I remember it correctly. I had nausea and gagged immediately after the treatment. We shifted to Cytoxan and it was all better. It was more expensive but there was less trouble after the sessions. I also got the hang of it. I knew I always had to hydrate myself the whole time, and it pays to have the I.V. drip water first for a considerable time before they put in the drug. It went on monthly for a year, then every three months, then every six months til the sessions were concluded.

To be very honest, I never thought I'd have to go through pulse treatments again. Anyway, it has to be done. Wish me luck.

110 Pounds Woot Woot!

2011-07-03T18:46:00.003+08:00

Well, at the very least the corticosteroids are helping me reach my pre-SLE-reactivation goal of gaining weight. Damn, my appetite is whack these days: I used to have this great office ability to not have lunch and still survive long enough for a quick fast food dinner. Nowadays, aside from lunch I now have the urge to have snacks in between meals: most of the time McDonalds in the morning. Now everyone who sees me says I look like I gained a few pounds. In reality I really did. I'm now 110 pounds based on my last weigh-in in the bathroom. My gut is now large, and hence my office pants are a bit of a stretch, if you get my meaning. I actually had two new office pants tailored using a new larger waistline. I told my doctor about my renewed healthy appetite and she mentioned it was all in the mind. Hmm. Really? Anyway, I think eating a lot is OK, especially for an ectomorph-since-birth like me. The problem I think are the complementary activities that needs to be done to make this lifestyle healthier... like exercise.

WFH

2011-05-03T07:34:00.002+08:00

This morning I'm now in the living room, eating breakfast. My request to work from home today (and other selected days of the week) got approved by my boss. So for today I'm not rushing on finishing half of my food, getting dressed and travelling 2-3 hours to the office. It's the closest compromise I can afford vs. the bedrest that my doctor is asking of me.

Definitely there will be some drawbacks in this arrangement. I won't be able to check on my project team physically. Although I have another manager there to do that. My broadband connection isn't that all too fast as well, and there's a likelihood that I'll still be working past the usual business hours.

The good part: I don't get to strain myself travelling to and fro the office; I can take naps if I want to (I just need to remember to log off from intra-office messenger); I can have my mother whip me up a snack from time to time -- since my doctor increased my prednisone dosage, I've been more hungry often.

Let's see how this arrangement goes. Hopefully it helps me get to that lab result that my doctor is looking for, so I get cleared.

Some Things I Lost Due to SLE.

2011-05-02T15:58:00.001+08:00

I just got promoted to Senior Manager last March 1 this year, and so those of you reading can probably say that the resurgence of my SLE condition isn't going to help me much. Definitely I'll be more guarded now, take more days off from the office, miss some deadlines, no complete some to-do's more so the nice-to-have's. You'll agree it won't do my office career any good. But then, since SLE manifested itself the first time, when I was in junior high school, I already started losing some stuff:

My top academic rank. I was the 1st Honor from freshmen to sophomore year. The absences I took (compounded by my lack of abilities in technology and home economics) landed me in 5th place in the junior year, placing me at 4th place by the time I graduated high school. Sure, I passed the entrance exam and graduated Cum Laude at the top University of the Philippines in my college years, but the drop was discouraging back then.
My place as the First Battalion S3. I signed up as a COCC officer as early as my sophomore year in high school. By the 3rd year I was being groomed to be the S3 (office in charge of documents, training) for the First Battalion in our school's cadet corps. I missed out on the summer training because I got confined to the hospital several times. When cadet season was back, I was too frail they assigned me to the Headquarters Cadet Corps, together with the rest who had medical certificates.
My think curly locks. I used to have thick hair wavy hair. Then the alopecia set in.
A home to rest in when I was sick. When I got sick we were living with my aunt in her canteen inside a military camp. News got around about her sick nephew and the camp administration got stricter. They closed my aunt's store and agreed to open it as long as me and my mother would not be living there anymore. We found refuge in my other aunt's house.
My first school year in U.P. I only stayed a few months after which I got confined already in the Philippine General Hospital, where I met my current doctor, who was the one who diagnosed me formally with SLE.
A chance to be part of the UP JPIA Choir. I was actually practicing already, but the SLE symptoms came back and I had to resign my post.
A job at the leading telecommunications company. I was qualified on all fronts, but the doctor at their medical testing facility told me they don't accept people with SLE. No if's or but's were entertained.

These are just some of them, the parts I could remember, the parts I couldn't forget...apart from me and my family's savings. Before you get concerned, I am not hung up on these. I'm just remembering. SLE has, in one way or another, "guided" me to where I am today. So the episode I'm having now with it will be accepted with the same faith and hope.

One-week SLE Dash. It's Back.

2011-05-01T15:07:00.003+08:00

April 22. I stood for n hours watching the Good Friday procession. Around 40-something saints and holy stations of the Cross paraded past. When we got home, I started to feel some chills.

April 23. Black Saturday. I already have fever, as high as 38.6 degrees Celsius. My lower back had pain and both my thighs were having rheumatism-like pain. Plus I had some cough. Took the usual meds, but decided to increase prednisone dosage. I took one more 5mg tablet in the evenings

April 24. Easter Sunday. Felt better but still had some pain in my legs and some in my back. Continued to take additional 5mg prednisone tablet at night.

April 25. Took a leave to have some tests taken at Medical City: CBC, Platelet count, ESR, Fecal Analysis with Fat Globules. Haggled myself a last-minute schedule with my doctor, Dr.Penserga on Wednesday. Her appointment list was full but I begged to be on it, I didn't think I'd last that long. Scheduled myself for Hepatobilliary Tree as well for the next day. The latter required fasting so I didn't eat starting 10pm.

April 26. Had my ultrasound done by 11:00 and had the results out by 1pm. All normal. Went to the office to work but I really didn't feel like 100%. I really had to see my doctor.

April 27. Asked my co-manager to cover for me in my afternoon meeting so I can take off for my doctor's appointment. Made it to San Juan De Dios Hospital in time. Key findings: ESR is abnormal, high. When I mentioned my lower back pain and the thighs, my doctor went on about risk of myelitis, and about my spine getting inflamed. Scared the s**t out of me. She ordered for a EMG - NCV test. We tried to get me admitted to The Medical City but the schedule was full. All I knew was that I needed to get that test done. My doctor recommended bed rest for the remainder of the week. I didn't argue.

April 28. Called up The Medical City Neurosciences department early to check for available slots within the day. Their earliest was May 5. I called up the San Juan De Dios Hospital Neuro department instead. Scored a 2:30pm schedule for the day. NCV meant Nerve Conduction Velocity test, where they had some current run through me at certain parts of my legs. EMG meant electromyography, where the doctor inserted a needle in some of my leg muscles and asked me to flex and contract. They were measuring my nerves and muscles now. I didn't think lupus would reach this point. Result came on a few hours later. "Motor-sensory mononeuropathy...multiplex of combined axonal-segmental demyelinating type...concommittal myopathy characteristic of SLE patients". Huh. Scheduled my doctor's appointment the very next day.

April 29. Doctor says my muscles have inflammation. We are now in a major active state of SLE now. She doesn't want to be too cautious now that the nerves and the muscles are impacted. She increased by prednisone dosage to 30mg/day and gave me a new friend, Methothrexate, which I need to take in 3/day every Friday for two weeks. As for the Myletis, the doctor says it can only be tested via spinal tap which I don't want. Her main advice is for me to be more aware about my body's condition.

Now I'm in bed, supposedly resting, deciding if I should go test myself by going to work tomorrow. Hmmmmm.

A Cure At Last (?)

2011-03-11T00:27:00.003+08:00

My friend Gene tweeted this news from The Washington Post about Benlysta, the first drug to treat lupus in 56 years that was approved by the U.S. FDA. It was created by Biotech drugmaker Human Genome Sciences Inc. (took them 15 years).

To early to celebrate though, the article says that " It only worked in 35 percent of North American patients tested and was not effective for patients with the deadliest form of the disease". However, hooray for my case since "FDA approved the drug for systemic lupus erythematosus, the most common form of the disease".

Then again, I think there's still a long journey for a real cure. The fact about clinical trials working for select profiles only shows there's still a lot of things still need to be understood about this condition. I hope to still be alive and well when that happens, and there is hope because as the article said, "Ten-year survival for patients diagnosed with the illness is more than 85 percent, according to the National Institutes of Health." Counting this year, I'm already on my 18th year. Waaaaaaaaay beyond the 10 year limit.

To read more about the article, you can check out The Washington Post

In A Few Hours, Another Year

2010-12-31T12:53:00.005+08:00

It's going to be 2011 soon and that means one more year with SLE in control. I survived one of the most stressful year for me, with the demands of work plus my mother undergoing operation. It was not without unplanned visits to my doctor for some flu or what-not. But I'm here, blogging. I'm here, not in the hospital. I've taken care of people, instead of being cared for in the hospital. Another year of being normal as my condition would allow. I'm happy. And thankful. For every year I'm afforded.

2010 - Another Year

2010-01-01T01:57:00.004+08:00

I'm still alive for another year. It's been what?-- 16 years since I got diagnosed with SLE. I am blessed.

Annual Physical

2009-11-28T23:18:00.003+08:00

My APE results are out.
It's supposed to be complied with yearly, but I managed to evade it until this year. By my count, I would already be in delinquent status if I didn't submit myself to tests this year. So under the possible threat of a HR memo, I went. Hehehe.

The process went more smoothly now that I'm a manager. In fact, this is the only time I felt like I was a manager: I had an attendant who did the follow-ups on the next steps for me; I had my own room to eat my (free) breakfast in; I had to go through treadmill tests; and, I got a free voucher for a facial in one of them skin clinics. Haha.

Anyway, the results are .... well, I guess to be expected given my age:

Suggest nutritional build-up. The ideal body weight for this height (166 CM) is 56.9 kgs - 69.5 kgs. I am currently weighing only 45.6 kgs.
Hypertension suspect. Recheck BP....If persistently high (=/>140/90) consult with Cardiologist. Advise regular exercise and low salt/fat diet.
Anemia. Avoid tea with meals since tea reduces absorption of iron.
Increased Uric Acid. Avoid purine-rich foods such as legumes, nuts, mussels, internal organs, beans, and alcoholic beverages.
Decreased HDL noted. Patient is at risk of developing atherosclerosis. Advise regular exercise and decrease intake of fatty food. Instead, increase intake of fruits, vegetables, fibers, fish (tuna).

Complete Remission?

2009-01-18T18:11:00.002+08:00

It has been more than a year and a half since I went for a check-up with my doctor. I sent her an e-mail when I got promoted to manager, but that was it. The thing is, I feel really tired now. Not sure if it's a sign that I should be setting an appointment with her. I seem to be doing fine with just Stresstabs and Poten-Cee

A Visit To My Doctor (After a long long while)

2008-05-27T14:38:00.001+08:00

Last week I paid a visit to my doctor, after more than eight months. I really wouldn’t have gone had I not felt really really worse due to my sore throat and cough. Not to mention the throbbing in my head. I had to go on medical leave from work, because I already knew that visits to my doctor take a while, especially since there are usually long lines of patients waiting for her, and she’s a bit tardy at times when it comes to her clinic hours. So it came as a surprise when I found no one in the waiting list, and I was the first one there.

Waiting for the doctor had the usual duration though. It’s during these waiting hours that I get to realize that I am a bit special. My doctor is a known rheumatologist, so most of her patients are in their golden age. A few middle-aged people also come in. When they see me, they assume I’m the patient of another doctor, until they ask. The questioning will usually start with “Kaninong pasyente ka?” (Who’s patient are you?). When I tell them, they go “Anong sakit mo? Ang bata mo pa” (What’s your condition? You’re too young.) When I tell them I have Lupus, they immediately go through the usual reactions: how I’m too to have it, what symptoms do I have, how its very rare for men to have this condition. Moments like this I get to reflect on how far I have come: It’s been 14 years since I’ve been formally diagnosed with this condition. The first few years were the crappiest, but soon the acceptance comes in after. And with it comes the coping. Now I’m in remission, as my doctor says. A pretty long one based on my count.

When my doctor arrived, my consultation time was only 15 minutes, less than 10% of the whole time I spent traveling all the way from the house to the clinic in Manila. It’s a simple viral infection this time. My labs are fine and no need for concern. The only prescription I got was for effervescent vitamin juice drinks (Berrocca) to beef up my immune system until my next anti-flu shot in June.

Expensive

2007-07-16T16:36:00.000+08:00

I just came from my doctor. Two doctors, actually. One is my rehab doctor for my back problem, who just discharged me from physical therapy. The other is my doctor of 15 years who's been looking after my SLE condition. My total medical bill for today ran almost three thousand eight hundred pesos. All in one day! It included my rehab doctor's professional fee, the fee for my last physical therapy, anti-influenza and anti-pneumonia vaccinations and my SLE doctor's professional fee for the vaccination. Am I glad my SLE doctor waived her professional fee for my check-up. Otherwise, the three thousand peso withdrawal I made from my ATM just this morning wouldn't have been enough, and I'd have to skip blogging to another day. *Sigh*. Sometimes I feel that this condition of mine is one of God's mechanism to put my in my place, to remind me that no matter how much I earn, I'll have to be more conscious and save some more than I ought to. I often think about those not really earning as much as I do (low as my salary is), especially the senior citizens. Medical care and treatment is very very expensive these days. My doctor is a rheumatologist and her lowest professional fee doesn't go below five hundred pesos per visit. Imagine all those old folks who experience joint and muscle pains due to old age, and they don't have the means to consult with a good doctor as I do. Makes me feel blessed in a way, even if I'm not THAT old yet.

Paying Up for Being Sedentary

2007-07-16T16:30:00.000+08:00

I've just finished three weeks of physical therapy. That meant three times a week that I had to leave before lunch at work, rush all the way to the Philippine General Hospital, and have my physical therapist do the following: massage my shoulders and neck via the "ultrasound" procedure, do a warm compress with towels, and massage me further to release the stiffened muscles on my neck and upper back. My condition did improve over the three weeks. Now my rehab doctor says I just need to be more conscious of my posture and in stretching more. *Sigh*. This is what I get for being such a couch potato and an office freak. Pretty expensive, this physical therapy thing. But then, I guess if I didn't have it, it'll be harder for me. Hopefully this back problem doesn't happen again with the regular stretching I'm going to do.

Lupus on "House, M.D."

2007-05-05T15:40:00.000+08:00

Just recently I have been hooked on watching the television series "House, M.D.". It's an interesting show, not only because of the cool lines from the show's lead character. It makes one realize that diagnosing an illness is for the most part, making educated guesses, taking risks, and working with what you have. I'm not sure if my doctor used "differential diagnosis" to determine that I have SLE 14 years ago, but I guess that was what showed, given all the symptoms I showed.

The show had one episode, "Detox", where Dr.House's team was treating this 16-year old kid, and this was the same time that Dr. House was trying to stay off pain killer pills. All the symptoms pointed to him having lupus, and it was a bit disturbing for me. I mean they concluded it was lupus because of the following: irregularity in the blood, blood coming out of every orifice, liver failure, high WBC count, and . . . psychosis. This was the disturbing part. They said the fourth criterion for lupus was psychosis. Hmmmm. Well, my friends do say I'm a whacko, but I didn't think my condition would eventually lead to me losing sanity. I don't think this show doesn't go with screenplays that are not well-researched also. I'm kind of . . . scared, if this is really a picture of what can possibly happen if my condition goes uncontrolled. Well, I've already had a glimpse of it during the first attack: rashes, very high fever, joint paints, muscle pains, blood in the urine, and falling hair. I didn't think it could be much worse. Pyschosis-worse. In a way, I am thankful that my condition is controlled, and it's been this manageable ever since my first attack.

The thing with me, I guess, is that I kind of take my having SLE for granted. I haven't actually researched on it, even after 14 years of being with it. I got probably used to being in the controlled state that I took the "normalcy" as a given. I used to say to myself that my health will come first above all, but the hustle and bustle of everyday routine probably made me forget about it: I sleep late; I'm in a stressful high-strung job; I don't drink water as much as I ought to. Hopefully it doesn't come back at me. As usual, when I get to a realization like this, I resolve to change habits. Good luck to me.

In the episode, it was eventually found that the kid did not have lupus, but had been poisoned with napthalene (because of the termites in his room). Lucky kid.

Was This A Sign?

2007-04-08T14:51:00.000+08:00

Earlier at church today, for some unknown, unwilled reason, I got to think, "What if this condition was a sign from Him that I should remain single?". Hm.

Two Trips To The Clinic.

2007-03-31T14:43:00.000+08:00

As of this post, I have been to my doctor two times already since my last post.

The first time was the regular routinary check-up, where I go to my doctor with a set of lab results in hand that indicate I'm as normal as I can be, and there's no need to worry. Well, there is some cause for concern. I lost weight, as if that was possible. The weighing scale doesn't lie though. My doctor already told me that I am in danger of having osteoporosis. She's scheduling me for a bone-density test in August, just before my birthday. Oh well.

The second time was unplanned, for a sudden bout with colds and cough, for which I was the first in line, only to be made the last because my doctor ordered me to go out (and not come back until I have) to get blood lab results. Anyway, the cold and cough was later on diagnosed as viral. Nothing to fear.

Is My Blood Safe To Donate?

2006-10-24T15:05:00.001+08:00

My friend's daughter had an operation last Monday. The weekend prior to that, I received a SMS from my project manager asking for blood donors for my friend's daughter's operation. My manager was also asking help in forwarding the same request to the rest of my projectmates. The blood type needed was Type O.

I am Type O (or at least, that's what I remember in the few times I had to go through blood transfusions in my youth). But then that doesn't help much. I would have liked to have given little Ysa some help in the form of my own blood, but I knew I can't. I knew as soon as I declared that I have SLE, and had asthma when I was a kid, my offer would be refused by the hospital (even if my friend agreed that I was no risk to her daughter). I'm not scared of being extracted with blood. If someone were to collect all the blood taken out of me each time I went for blood chemistry, he would've filled up one blood bag, or two. But t would be one bag full of the blood of someone who was sickly since he was a kid and still has a condition now fueled by corticosteroids. And though I'm not that aware if being sickly can be transmitted via blood transfusion, I knew there's something wrong in pursuing the idea further. So, I just contented myself with texting my friend that my blood was no good as he knew I had SLE, so I was thinking my prayers would be enough help instead. He just texted me in the morning after to say thanks.

After that, I had this down sort of feeling. A combination of frustration, annoyance, sadness, irritation, and guilt. Here I was, Type O, but then my blood would be surely be refused because of my condition. And this is my close friend we're talking about, whom I would really like to have helped out. It's a painful feeling that aside from forwarding messages to friends looking for possible donors and asking them to pray for the little kid, there was nothing more I could be of service of, even if my blood type matched what was needed. It's a sinking feeling actually, because this realization applies also to anyone who would need my blood donation. It could, God-forbid, be one of my relatives. And by that time, I'll still be willing to give it, but no medical institution will take it without reservation. Then again, this is just another thing I would need to get used to.

Is My Blood Safe To Donate?

2006-10-24T15:05:00.000+08:00

Lab Tests?It's All Second-Nature To Me Now

2006-10-14T13:38:00.000+08:00

If I got a peso for every laboratory test that I took since I was diagnosed to have SLE, I would have enough to buy my favorite mocha frapucchino at Starbucks, venti-size, for a week. During the early periods, when check-ups were frequent, I was just stuck at home siphoning the family money on medicine and treatment, it used to be a bother to me to go to hospitals and get my lab results. And I need to have lab results with me everytime I go to my doctor. Otherwise, it'll be just a wasted visit. There are some laboratory tests requested like thyroid profiles, and C-reactive protein, and x-rays over the years but always 3 tests have become a sort of "staple" for me everytime: complete blood count (CBC), urinalysis, and edema sedimentation rate (ESR). It used to be a pain getting these tests done -- the waiting, the cost, and later one the time away from either school or work.

Now, it's like second-skin. I go to the triage, present the request, get billed, pay, go to the medical technician, get my blood extracted, then go to the bathroom and collect urine. Sometimes I have to stifle a smile when I come across a grown man, much much larger than me, who can't even look at the syringe when blood is being extracted from his arm.

Thankful

2006-08-25T11:46:00.000+08:00

I just turned 29. Who would've thought that that sick boy with that half-butterfly rash on his face and falling hair in that hospital bed last 1993 would make it this far? I sure didn't. Just when I think people wrote me off as some sickly kid who would burden his family indefinitely, I got back to school. I graduate with honors. I got into stable job(s). I got to go to the United States, Singapore, Thailand, and France. Who knew I'd go that far? I guess HE did.

Thank You, my Shepherd, for blessing me this much. I have walked in the valley of the shadow of death but then You annointed my head with oil, so my cup runneth over. I have doubted You so many times but You have been faithful all this time. May I live this life You gave me and use this third chance You gave me to live a life pleasing to You.

Hymn by Jars Of Clay

Oh refuge of my hardened heart
Oh fast pursuing lover come
As angels dance 'round Your throne
My life by captured fare You own

Not silhouette of trodden faith
Nor death shall not my steps be guide
I'll pirouette upon mine grave
For in Your path I'll run and hide

[Chorus:]

Oh gaze of love so melt my pride
That I may in Your house but kneel
And in my brokenness to cry
Spring worship unto Thee

When beauty breaks the spell of pain
The bludgeoned heart shall burst in vain
But not when love be pointed king
And truth shall Thee forever reign

[Chorus]

Sweet Jesus carry me away
From cold of night, and dust of day
In ragged hour or salt worn eye
Be my desire, my well sprung lye

[Chorus x 2]

Spring worship unto Thee
Spring worship unto Thee

C Reactive Protein

2006-06-18T16:33:00.000+08:00

When I was having my laboratory examinations done at Medical City a few weeks ago, I was surprised to see another item in the lab request. My doctor apparently added another extra item to my usual lab tests. I don't usually pay attention to what is written there, because after so many years, I got used to the fact that it usually contains the usual things: Urinalysis, Complete Blood Count (CBC), and Edema Sedimentation Rate (ESR). Now, there's a new line there, a more expensive line. It was "CRP". At first I thought it had something to do with the heart ( a Cardiac something exam ). It was expensive, more pricey than the other tests for me at about one thousand four hundred pesos. When the results came out, I already got the name of the expensive test: C - Reactive Protein. When I had my monthly check-up, I asked my doctor what the test is all about.

She said it's a measure of system inflammation. Hm. I thought that ESR was the measure of inflammation (by the way, all my labs are normal). She said that ESR goes beyond normal when inflammation like rheumatism occurs. CRP, on the other hand, becomes abnormal when the inflammation is due to infection. So it is possible that my ESR could be normal but my CRP isn't. But then again, as my doctor said, there's more analysis to be done than just looking if it's beyond the normal levels. Problem is, my doctor requested it again for my next check-up. Looks like its another two grand plus plus for lab results next month. *Sigh*.

Stop The Oil, My Doctor Says

2006-04-21T14:47:00.000+08:00

My blood test results came back and I just got back from my doctor. My Triglyceride indicators are higher than the normal standards. My doctor says this is just a function of the diet. She's recommending that I eat more inihaw and nilaga. Hm. Life without delicious oily foods. Sounds bland.

Losing It ( My Appetite, That Is )

2006-04-16T10:29:00.000+08:00

I think I'm having eating problems. For the past few weeks, my appetite's been off. I've been eating little. I'm not really the hearty eater. And I really am a picky eater since I was a kid. But lately, I've noticed that I'm eating less than usual. My appetite isn't that good nowadays. It's like I either feel like I'm full or I don't have the desire to eat.

On workdays, I really don't eat exactly at twelve noon. I usually wait for the crowd at the microwave oven to thin out before re-heating my packed meal. But even then, I just eat because it's time to eat lunch and I want to get it over with. Not that much gusto there. And I usualy have leftovers, even rice.

The only time I felt so hungry and ate "voraciously" was last week. I just finished working on a production issue ( it was already past one ) and I felt famished. I didn't have packed lunch then so that meant it was a choice between KFC and Chowking. I finished a merienda-sized fish tausi and beef siomai for lunch. I think on that same day going home, I had the urge and bought a Spanish sausage bunwich while waiting in line at the shuttle terminal.

During weekends, when I usualy wake up late, I miss meals. Well, not really miss them, but I don't eat on time. I have a slow breakfast at about nine, and lately it's just been on sandwiches or some non-rice dish like pansit bihon because my mother noticed I don't have the liking for rice and viand lately. This leads me to to have lunch at around two and that's if I do have the appetite for it. Sometimes I opt out and have merienda later.

The craving for any kind of dish isnt' there anymore. When out in malls, I get enticed by pictures in menus and posters but that's just about it. If I do order something, be it because of visual stimuli or just because I have to eat based on the time, I don't usually finish it at all. There're usually leftovers which would have been good if I had a doggie bag with me and if I still had dogs. The one that gets me by on weekends are ice cream sandwiches. Yup. Ice cream on monay bread or pan de sal. I usually finishe two to three of those. That, plus fruits.

I wouldn't have made this a big deal by blogging about it, but I noticed that I really am not eating well. Well, that, plus I think I'm getting thin. Correction, thinner. That would be good news to someone who's not as slim as I am. I'm already a toothpick as it is. To get any thinner would make me a matchstick man made flesh, er, made bone and skin to be exact. But then again, with my appetite not cooperating in making me eat more . . . .

I wonder if enrolling in gym classes could help? Hm.

A Visit To The Eye Doctor

2006-03-25T16:42:00.000+08:00

After 4 years, I went back to the nearby Optometrist in town to have my eyes checked. I actually have been just wanting to change the frame of my glasses. There, I was told that my astigmatism shooted up, which was not normal. The optometrist said that astigmatism usually declines as the years pass. Then again, this is me we're talking about. I've given up on being "normal". Thus, my left eye now has a 200 astigmatism while my right eye has 150. All in all, both my eyes are over 300 in grade. The good thing about it is, I think I found a good pair of frames that will make me look like I'm not wearing glasses ( from afar of course ). And the optometrist recommended that for those kinds of frames I use Airwear lenses: 43% lighter than normal plastic lenses, 10 times stronger though, and made from material used for space helmets and aircraft windshields. It also cuts 100% UV and absorbs 100% of UVA and UVB radiation from sunlight. Hell. At least that's what the brochure says. All this for a whooping X,XXX pesos. I should be getting my new eyes next weekend. Oh well. Thank God for medical reimbursement benefits.

Getting Too Old For This

2006-03-03T13:14:00.000+08:00

I just saw my doctor this morning, CBC and Urinalysis lab results at hand. She wasn't really happy. That meant I left her clinic with prescriptions similar to what she gave me last time. That meant no decrease in dosage for Prednisone and Azathiophrine for me. There were no decreases, only additions. Now, aside from the usual requests for CBC and Urinalysis, I have to take tests like Cholesterol, Triglyceride, LDL, HDL, and, what's this written on the prescription, ACT? She told me for these tests I have to fast for 10 hours before the (blood) extraction. *sigh*. Her reason? "You're not exactly 21 anymore so you should be checking on these things also. Then when I complained about my head hurting on my eyes, she recommended I do treadmills in the gym. Imagine me, doing treadmills. That would be a sight to see. She said she's thinking that my head hurts because I have so many things on my mind ( how she knew that, I don't know. She must have a spy on me in the office ) so I need to release it via running or moving. Oh well. We'll see. I'll do anything to keep out of the hospital.

No Check-Ups For Now

2005-12-20T12:52:00.000+08:00

I've been back in Manila for more than a week now. Despite the constant reminders of my mother, I still haven't been to my doctor yet for a visit. It's not really mandatory for me to come see my physician everytime I come home from a foreign assignment, but my relatives I guess want to be sure that I'm still fine and they don't see another episode of what happened to me last May. I feel fine. Some people say I grew thin, some say I grew fatter but the general consensus is that I look a-O.K.. I guess that's a source of comfort for now. Actually since I got back I've been staying up late again, either due to traffic going home, or parties and dinners I've been going to with officemates and friends. I haven't really regained the lost sleep I had on the flight home from Paris. Compound that with the little amount of sleep I've been getting these past days and I'm pretty sure I won't have "acceptable" urinalysis, CBC, and ESR lab results. So I think it's better that I don't see my doctor for a while. In any case, I think she'll be on Christmas vacation too.

A SLE Patient in Paris, France

2005-11-17T15:38:00.000+08:00

I guess more than 12 years ago when I was still first hospitalized, nobody would've thought I'd go far after. And when I mean far, I meant other countries. I even thought the same when I got re-admitted again for a re-activation of my SLE just May this year. I've been to Singapore, Thailand, and now . . . . France.& Who would've guessed? I didn't. I guess I'm just blessed.

My Doctor Would Be So Angry

2005-07-28T12:31:00.000+08:00

I am not meeting her requirement that I get at least eight hours of sleep, especially on workdays.
I am in information technology work, which by nature is stressful.
Because I come home late at night tired, I sometimes forget to take my second tablet of Azathioprine after dinner, which she prescribed to be taken twice a day.
I'm not drinking that much water also.

I'm A Rare Find

2005-07-16T13:29:00.000+08:00

Not so few people, my doctor included, have told me that it's very rare to find men with SLE. I remember the very first time I saw my doctor in a hospital bed at the Philippine General Hospital 12 years ago. She patted my thinning crown (due to hair loss) while talking to the resident physician and said, "Espesyal 'tong batang 'to."

True enough, most of her patients with SLE were female. The only guy with lupus that I know, and so does everybody else, is deposed president Ferdinand Marcos. It probably strikes men of great minds only. Wahahaha.

Kidding aside, having SLE when you're a guy poses a problem which I think is peculair for men only. We cannot afford to slow down, especially if we're breadwinners in the family. We don't have the luxury of having to afford to take it easy. We can't, for example, resign from work and look for less-stressful-but-low-pay work when our doctors advises us since we don't have husbands/boyfriends who can support us, not like women in the same situation as us can do. Even my doctor acknowledges this. When my doctor told me to slow down 12 years ago by taking leave from school for a semester, and then another semester, I could afford it because we were living with my aunt. This second time around, my doctor knew I'll have some reservations because unlike the first time, I am already supporting a household.

In the end I guess it's always up to the man concerned if he wants to take his doctor's advice or reach some compromise somehow. I'm not aware of any study on the life expectancy of guys with SLE, though I cling to my doctor's assurance that the probability ofa car driver dying of an accident in EDSA is higher than the probability of me dying of SLE. It's not really reassuring but it'll do. I am reminded of this quote from the HBO miniseries, Angels in America:
"So we live past hope. If I can find hope anywhere, that's it. That's the best I can do. It's so much not enough. It's so inadequate. But still . . . bless me anyway. I want more life."

"Sorry, We Can't Hire You."

2005-07-14T12:16:00.000+08:00

There was this one time when I really thought I wasn't going to be employable just because I had SLE.

It was when I was applying for a position in this telecommunications company. I was in an auditing firm then and, like others who just gave audit a try but didn't like it, I was looking for another job. The interviews and exams with the company's recruitment office all went well. It came to a point where all that was left was the pre-employment medical examination. And it was all it took to negate my chances for the job. Just because I specified I had SLE in the patient information form. The doctor was cold and blunt. He just confirmed if I had SLE and then said, "Sorry, we can't hire you.". It's not their policyto employ people with a condition such as mine. It was a pretty hurtful experience for someone who's barely one year-old in the corporate world.

After that, there was always that nagging fear at the back of my mind that I won't be able to get a good job because I had SLE. I could choose to not disclose it, but I still wrote it down everytime lest I be accused of hiding pertinent information. Luckily enough, it didn't matter in my second job, or third job. I'm now about to start on my fourth job where my having SLE somehow mattered. The recruitment team wanted me to consult with their recommended rheumatologist. They later changed their minds when they realized I had my own rheumatologist and they just asked for a medical certificate, which I secured immediately. The doctors at the company clinic raised the hurdle a bit when I submitted the certificate. They want my doctor to issue a medical certificate saying that I'm fit to work everytimeI go for check-ups. I've every intention of complying.

I still believe having SLE shouldn't be that big a factor when deciding whether to hire or not hire somebody, as long as they're competent and fits the job well. But then again it's their company and I'm jut trying to find a decent way to earn a buck.

Digging Deep To Live

2005-06-17T13:02:00.000+08:00

When I was in the hospital last May, one of the six patients I shared the ward with had this kidney problem. The patient and his wife got admitted a day after me. They told my mother that the Philippine General Hospital (PGH) didn't have any more rooms available so they got referred there (The Medical City). It wasn't me or my mother's habit to eavesdrop, but you can hear anyone who speaks clearly inside the ward, even those on the other side. One day the attending physician eplained the man's condition. His creatinine was too high, which the doctor said was a clearsign that his kidneys were failing. Creatinine, as I understood it, was a measure of the poision in the blood. The doctors were recommending dialysis and inserting a catheter as initial steps, if the couple agreed. Of course, like any ither normal Filipino availing of medical care, the problem was money. The next afternoon there was the "council of elders" (family members and relatives) at his bedside, discussing what to do. By evening, the couple said theywere going to check out, even if it was against the doctors' good judgment and they have to sign a waiver. One doctor even said that the patient can die in a matter of weeks given his condition. There was no talking the couple out it though. Bahala na daw ang Diyos sa kanila. Baka maibenta pa nila bahay nila pambayad pa lang sa ospital. And it's true. Dialysis costs are exorbitant. Anaesthesiologist fees (for the catheter I think) are high. Operating room rentals are expensive. But then, if it's what you need to continue to live....

It raised a question in my mind, "how far would you go to have a few more days or weeks?". When I got sick leading to my SLE diagnosis, I ran up bills in Manila Sanitarium and then in the PGH. My mother was only a cook in my aunt's canteen, so it a natual consequence that we had to incur debt, lots of it. And not only financial debt, there was lots of utang na loob. The prognosis involved treatments and medications also and that didn't come cheap too. If not for the assistance of my aunt, uncle, cousin, and nanay-nanayan, we wouldn't really have been able to afford it, and finish college at the same time. Even after all the debts have been repaid, I guess one can never really repay utang na loob. My mother had to eventually sell that small lot she saved up when she was a housemaid to finance the whole thing. It was a sad thing to do, and is still a sad thing to remember. But it had to be done. I'm well into my 12th year with SLE so I guess all those thousands of pesos extended my life a few years more. Now that I'm "reactivated", I'm starting to incur costs again to cope with it: medicine, airconditioning my room, I'll possibly be renting a place near work so I can meet the 8-10 sleeping hours mandated by my doctor. The thing is, I'm between jobs right now so I'm basically digging from my life-savings. Thank God I saved up something from my Thailand assignment before. Thank God my mother and some relatives didn't give up on me that easily (and they had the means to help me out) the way that couple did on themselves. It was immeasurably more than what that man and his wife had.

How I Wound Up In A Hospital Bed (Again)

2005-06-03T15:55:00.000+08:00

When I got hospitalized last May 6-11 at The Medical City, everytime family and friends come visit, I find myself recounting the events that transpored and landed me in a 750 pesos/day medical ward. There were several visits and at one point visitors came in succession that made me think, "I wish I had a tape recorder". It was like the scene in The Crying Ladies where Eric Quizon's character kept repeating the details of his father's death to different people, using the exact same words.

I would have to describe this second SLE attack as sudden but turns out to be a looong day. At 2 AM last May 6 I woke up shivering so I got up and turned the electric fan off. It wasn't the fan, because I still shook uncontrollably after. I knew then that I had fever so I went to the kitchen for some paracetamol. A few minutes later my mother came to ask if I was OK so I told her I had fever. She brought me my comforter and made me wear socks. After some time, the fever went down and then went up again. and then the diarrhea set in. By 6 AM I was still hoping that Biogesic and Diatabs would be enough. By 9 AM, I was calling my doctor's clinic to check if she was coming in that day.

Her clinic was in San Juan De Dios Hospital in Pasay City. Lucky for me she was always late so we had time for that long ride from Rizal. Needless to say, I was already pretty weak. Still, I didn't want to think my SLE wasa acting up again. I also didn't want my mother to worry more than she already was, so I had to pretend I was OK during our long commute to the clinic. When we got there, we were the 15th patient in the queue so that gave me time to get my usual lab tests: complete blood count (CBC), urinalysis, erythrocyte sedimentation rate (ESR). Typical with hospitals, I had to endure the long lines both at the cashier and the laboratory before I got tested. I also fell asleep while waiting for the results. When they did get released, my white blood cell count was beyond normal as well as my ESR. There were other abnormal indicators for the blood but my attention was on the urinalysis results: Protein was two plus signs, instead of being negative. Protein has always been the indicator my doctor looked at to see if my kidneys were flared up. Still, I was never hospitalized for two plus signs ( it takes four I think ). When my name was finally called I was so sure my doctor would just prescribe some high-priced drug and then tell me to see her again after a few weeks. She said she'll be confining me because she'll administer the medicine intravenously. Of course, I tried to bargain for out-patient treatment but there was not talking her out of it. She was already writing down admitting orders.

The only question left was which hospital. On her advise, we went to The Medical City in Ortigas because it was one ride away from Rizal and my doctor lived nearby so she could monitor me closely. On the taxi ride over there, I was fuming silently. I couldn't believe I was getting hospitalized again for SLE after so many years of being "under control". When we got to admission, there was no available room in the ward section, the cheapest one. My mother and I decided to wait it out instead of taking that one-patient room with television and telephone. At 5 PM, there was still no room so I told my mother to go home already because the dogs needed to be fed. She could come back the next day with fresh clothes and other stuff in-patients needed. At 7 PM, I texted my mother to say I'm planning to take the expensive room. When I approached the admission officer, and told her she told me to wait for an hour or so because she's still checking about the cheaper room I originally preferred. I got admitted into ward N606 at past 8 PM. My being weak didn't stop the medical staff to do the worlks: hook me up to an I.V., send me to radiology for X-ray, take my blood pressure and temperature, get my medical history. I didn't know what time I got to sleep. It was a looooong day. The first of a 5-day confinement and the start of another round of "controlling" SLE>