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.


How I Wound Up In A Hospital Bed (Again)

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>