Expensive

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

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."

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?

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.

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?

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?

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.

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

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

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

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

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 )

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

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

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

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

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

• 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

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."

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

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.