A Revival

P+F

The third day of the mid-year Prayer and Fasting week was on a Friday and I was really excited to attend the service instead of just watching the live stream at home.  I took the option of going on a partial fast, which means I was sticking to soup and water (and coffee!) until the end of the P+F week.  I’ve always wanted to go on a full fast (and maybe I’ll be able to do that in the future) but for now, my steroid intake is just not compatible with fasting. If you’ve ever been on steroids, you’ll know how challenging it is to even go on a partial fast :))

Anyway, the point of fasting is to scale down on things that keep you from having more time with God.  So for this week, I was also absent from yoga classes and social media (Facebook, Instagram).  Instead of letting these things take up my time, I tried to read the Scripture and my devotionals.  Of course I couldn’t take time away from work or mothering, so my grumbling stomach served as my cue to take a break from whatever it was I was doing to read and pray for a few minutes.

Despite all these, I still felt like I haven’t really gotten into it, no breakthroughs of any sort.  I don’t know, maybe I was being mechanical about it.  So on the third day, I planned to attend the nightly service at CCF.  Friday, no work the next day, perfect timing.

The second song was “I Lift My Hands” by Chris Tomlin and I was caught off guard with how much the words brought up a jumbled mix of emotions.  The chorus goes, “I lift my hands to believe again,” and people starting lifting their hands in worship and I strained so hard not to start bawling like a baby (without much success, to be honest).  I was overwhelmed with guilt as I realized that I had strayed, that I have fallen back into my old mundane patterns of self-reliance, pride and relegating Scripture back to head knowledge.  I have stopped taking time during the day to pray sincerely and listen for Abba’s answers.

But it wasn’t just guilt that I felt; there was a powerful touch of gratitude underscoring that guilt because I knew that He would always welcome me back, to resume my walk with Him.  I remember one night, when everyone was asleep and my mind was aimlessly wandering.  I was playing worship songs on my phone, because my kids love having “Jesus song” as a lullaby.  I found myself praying before I fell asleep and I ended with “I miss you, Abba. Will You come back?” and almost immediately, I felt Him gently answer, “I have always been here.  Where have you been?” I cried myself to sleep that night.

So anyway, back to the third service of the P+F week.  For some reason, I thought the topic was on provision and I was surprised when it turned out to be on healing.  The message and testimony made me think back on the health rollercoaster I’ve been on for the past year.  This time last year, I had just gotten out of the hospital after being confined for almost a month.  That was the first of four hospitalizations; I was in and out of the hospital as we (me , my husband and fellow doctors) tried to figure out how to get my cataplexy and adrenal insufficiency under control.

After being discharged for the fourth time, I was really fed up with the back and forth situation and I made a bargain with God as I prayed for healing.  I promised to give up smoking in exchange for complete healing.  I still haven’t kept my promise, but being the faithful God that He is, Abba already started answering my prayer.  I couldn’t wrap my head around it when I started realizing that I was getting better and that my prayer is being answered.  I think it was partly because I humanized God in a way, thinking that He will withhold His promise until I kept mine.  I had forgotten that because of His unconditional love, He can and will do this for me because He still loves me even when I falter and repeatedly make excuses.  Again, guilt underscored by so much gratitude.

It’s been a year and yes, I have experienced His miracles.  They’re very personal and small in the sense that it only affects one person (me).  It’s not a let’s-publish-a-paper, sound-the-alarm kind of thing.  What counts as a miracle for me? The simple things:

  • Being able to enjoy a long, cold shower when I used to bathe sitting on a chair as a precaution against falls and because I couldn’t stand up for more than a few minutes (adrenal insufficiency and cataplexy at their finest :P).
  • Being able to wrestle, tackle then carry both my kids AT THE SAME TIME. A year ago, I had to plead with my younger daughter whenever she wanted me to carry her because I just couldn’t.  The few attempts a few weeks after coming home from the hospital were scary because of the cataplexy.
  • Being able to go back to yoga! I never thought I’d be able to do anything physically challenging because regular sedentary life was already an actual physical challenge a year ago. And now here I am, working my way back into my arm balances and inversions (VERY slow progress with inversions).

I still have full-body cataplexy from time to time (had one just last week), but it’s not as bad as before.  I’m still on steroids and thyroid meds, but I’ve been doing well without the other medications that I used to take.  Will I ever be completely off meds? The doctor in me says no.  Will I ever be able to say I’m completely healed? I honestly don’t know.  All I know is that it’s time to keep my promise.

 

You will seek me and find me when you seek me with all your heart.Jeremiah 29:13

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.Deuteronomy 31:6

 

2A man with leprosy came and knelt before him and said, “Lord, if you are willing, you can make me clean.”

3Jesus reached out his hand and touched the man. “I am willing,” he said. “Be clean!” Immediately he was cleansed of his leprosy.Matthew 8:2-3

 

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Working with Narcolepsy

In the Narcolepsy Network Facebook group, there are posts from different people echoing my thoughts and emotions when I was first diagnosed with narcolepsy and cataplexy – disbelief that there is an actual clinical condition that makes you want to sleep all the time; an ounce of validation in the yay-I’m-not-just-being-lazy-after-all sense; confusion over what cataplexy was; and mostly frustration over the assortment of medications I needed, and the lifestyle changes that it entailed.

I recently came across posts asking the members of the group if there are any “successful” narcoleptics out there.  I’m not sure how “success” is defined in this manner, whether it means just being able to carry out normal everyday tasks without difficulty or a more ambitious sense of flourishing in all aspects of life.  I personally think “success” is very relative, but in the hopes of encouraging someone else with unusual conditions, I felt like sharing my own story.

 

All things considered, I shouldn’t even have a job right now.

Back in September of 2014, I was working part-time as one of the company physicians of St. Luke’s Medical Center Global City (SLMC-GC).   Although the workload was heavy at 30-40 patients per shift, the salary was pretty good compared to what I usually earned as a freelance general practitioner.  Being a large tertiary hospital in an upscale area, the environment was a vast improvement from my previous workplaces.  Plus there were a lot of perks care of our hard-working clinic manager – free Vinyasa yoga and Zumba sessions every week, discounted membership at a nearby gym, etc.  A typical workday would usually end with a dinner date with my husband (Karlo) in one of the many interesting restaurants in GC.  I thought I had it pretty good.

Then came February.  What an, um, eventful month.  I was set to go on leave for 2 weeks to be able to spend time with my in-laws who were visiting from the US.  I had arranged for a reliever and meticulously went over my endorsements, to make sure that things would go smoothly while I was away.  On my last day, I carefully packed away my things and made some space in the cabinet so my reliever will have a place for her things during clinic hours.

Day 1 of my leave consisted mostly of airport pickups.  Day 2 was our errands day, spent on buying stuff we needed from the grocery store, people getting haircuts, mani pedis and other pampering treatments, etc.  At the end of the day, I was cranky-tired from walking around with my two kids, because my younger daughter was still in the stage where she preferred being carried around even though she can walk already.  Then came that call from Karlo.

At first I thought he was just checking in to let me know what time he’d be able to join us, because his case extended unexpectedly (he’s an anesthesiologist in SLMC Quezon City), but from the tone of his voice, I immediately knew something was wrong.  With a shaky voice, he told me that my youngest sister had just called him to say that my dad collapsed at home and that his words were slurred when he told her to call Karlo.  I cried and panicked and couldn’t sort my thoughts.  Thankfully, my mother-in-law swooped in and started praying while hugging me tightly, and my father-in-law immediately made plans to drop everyone else off and drive me to QC.  After the nerve-wracking 3-hour drive to QC, my worst thoughts were confirmed – Daddy had a stroke.  He was in critical condition for 3 weeks before he passed away at the end of February.

While my dad was still in the hospital, I faced some pretty tough decisions.  I had to extend my leave from the clinic for two main reasons – 1) my kids’ nannies took the weekend off as we have previously agreed on, but did not come back without any word;  2) my 3 other sisters were still in school and had classes every day so no one else can stay with my dad  (Mommy passed away 16 years ago).

The first thought of resigning from work came when I had difficulties looking for another reliever because truth be told, a lot of freelancing GPs are really just after the money and will bolt at the first sign that the offered work was tougher than it looked.  But every time I thought about drafting my resignation letter, I kept worrying about my dad’s growing hospital bill which was already past the P 1M mark at the time.  Every time I posted job details in a freelance GP page, I limited the duration to 2 weeks at a time, hoping that I would somehow find a way to go back to work and earn a little to be able to start paying off the debt.

Our situation seemed so hopeless back then though because as long as I hired a reliever, my entire salary went to that doctor.  So I was essentially just stressing myself out with looking for a reliever every 2 weeks and still had nothing to contribute to our family’s expenses.  I ended up asking for financial assistance in every way I could think of, including reaching out to family and my dad’s friends for help.  Every morning started with hopeful prayers for provision and every night ended in physical and emotional exhaustion, asking God for guidance and tearful pleas to move people’s hearts to share the financial burden that had already ballooned to P3M in 3 weeks’ time.

It was so easy to panic and worry and give in to despairing thoughts, but God was gracious enough to send reassuring words through Bible study, Bible reading plans/ devotionals, Sunday services, and other means.  These were the verses that were always ran through my mind whenever I was tempted to feel overwhelmed:

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. – Jeremiah 29:11

The LORD will fight for you; you need only to be still. – Exodus 14:14

Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. – Joshua 1:9

This is what the Lord says to you: ‘Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God’s. – 2 Chronicles 20:15

They were comforting, but I knew that these words would only hold true under one condition – that I was obeying and surrendering to my Lord’s will.  Should I resign? If this is God’s plan for me, is it according to His timeline?

The answer came a few weeks later, when I was contacted by our clinic manager, asking for updates because my contract was due for renewal.  I was still on the fence about it, so I asked her to give me a day to decide.  Thankfully, she is a fellow Christian, so she didn’t pressure me when I asked for time to pray about it. In the end, I did resign after realizing that I needed to make myself available to take care of my kids, sort out the paperwork concerning my dad’s recent passing, and generally taking over the responsibilities of running our large, blended household.  Even though I had several misgivings about our financial situation, I continued to hold on to God’s promise of provision.

Two months later, a friend asked me if I was interested in a home-based work.  The company that her sister works for was expanding their Manila office and was looking for more doctors to be part of their growing team.  I asked for the details but couldn’t commit outright because I wasn’t sure if I was ready to take on a real job since I still had a lot of responsibilities at home.  After praying about it, I decided to give it a try  since there was a trial freelance period anyway.  I was given two projects to work on which I carried out as best as I can, but admittedly I wasn’t sure if I did it well enough.  Afterwards, I was offered a regular contract much sooner than I expected and I was thrilled beyond words!  I was going through a really rough situation at that time and I needed something good to keep me busy…but apparently, I had a surprise waiting for me.

A week after signing my contract, I was hospitalized and was later on diagnosed to have narcolepsy with cataplexy and adrenal insufficiency.  The timing was so inconvenient as I had just been assigned to a new project and I really thought that I’d lose the job that I had just signed on for.  Thankfully, my superiors were very understanding about the whole matter and made adjustments to my workload until I was able to recover and really start working.

The first few months were very unpredictable because I was in and out of the hospital while my doctors and I were trying to figure out the right combination of medications that would allow me to function well.  During the next few hospital admissions, I brought my work computer with me and insisted on continuing my projects since I was bored to death in the hospital, having nothing else to do while waiting for lab results and doctors’ rounds.  I think it sort of paid off, since I became more familiar with this new type of work that I never knew existed while I was in med school.

In hindsight, I really felt Abba’s hand in providing this opportunity because of how perfectly it fit my situation – it’s such a big deal to have a medically related home-based job because given my health conditions, residency training and clinical practice were no longer feasible options for me.  Right now I’m on my 6th month as a medical writer and I’m enjoying every minute of it! The topics are all so very interesting and waaaaaay beyond what I’ve learned in med school.   Sometimes I get so excited about my given topic that I end up having a cataplectic episode.  :)) Seriously. :))

With all that has happened, I can truly attest that there is a loving, sovereign God who cares deeply enough to pay attention to the little quirky details of my life and sets up beautiful plans to take care of His children and for that, I am simply overwhelmed with gratitude. 🙂

The heart of man plans his way, but the Lord establishes his steps.Proverbs 16:9 (ESV)

 

Plus a recent bonus ^_^ :

yehey

 

I can do all things through Christ who strengthens me. Philippians 4:13

Puzzling Symptom #2 (and an exciting lead): Muscle spasms

I’ve been having another puzzling symptom lately  – spasms of the intrinsic muscles of both hands.  The spasms were benign enough when they started, and it usually just felt like a threatening cramp.  But then last Friday, they became a LOT worse, causing my hands to close in weird ways (thumb and index finger clamping together, or the index and middle fingers crossing towards each other at the base), and interfering with my work.  I panicked and shouted for help because at some point, I couldn’t keep my hands open by myself anymore.

The spasms were relieved by countering the direction of the involuntary movement, much like a regular leg cramp (that usually happens when the ankle is extended, so you flex your ankle to relax the gastrocnemius muscle – a technique used by divers and swimmers which I learned in skin diving class in college).  I had a deadline to meet and a quick online tutorial after that, so I really couldn’t afford to not be able to use my hands that night.  I continued to work in between spasms but laid my hands flat on the table and put my weight on them to relax the muscles whenever they cramped.  I was able to meet my deadline and complete the training, but my hands continued to spasm intermittently all night long.

I took videos because it’s so hard to describe, and then posted them on Facebook to give crowd-sourcing a try.  Just making good use of my medical connections. 😉  A friend of mine sent me a message, suggesting the use of baclofen, a GABAinhibitor that I admittedly wasn’t too familiar with.  I planned to buy baclofen the next day if the spasms continued to get worse.

baclofen

I went through a few possible differential diagnoses, mostly electrolyte imbalance, because my adrenal problem seems to be making my electrolyte balance go haywire lately.  When I was discharged after my fourth (yes, fourth) admission about three weeks ago, my sodium, potassium and ionized calcium were on the low side so I was taking medicines to correct those problems.

Hypocalcemia is logically the prime suspect since it usually manifests with tetanic muscle spasms (muscles need calcium to release the cross bridges between actin and myosin fibers to relax – sorry, Physiology is one of my favorite subjects 😀 ) – except that I had just had my sodium, potassium AND calcium (both total and ionized) rechecked as follow up two days before the spasms happened.  My calcium levels were normal, as were my sodium and potassium levels.  I had to run a few Google searches then cross-referenced them on Medscape and I was convinced that the cause is most likely hypomagnesemia for the following reasons:

  1. Hypomagnesemia can also manifest with muscle spasms.
  2. Magnesium wasn’t included in my recent electrolyte panel, so I couldn’t rule it out at the moment.
  3. Hypomagnesemia can be caused by decreased absorption from dietary sources, mostly in people taking proton pump inhibitors (medicine that reduces acid production in the stomach) like omeprazole. I have been taking pantoprazole (same family but stronger than the others in its class) then switched to omeprazole since July to prevent ulcers because I need to take corticosteroids on a long-term basis.
  4. Also, hypomagnesemia can be caused by increased adrenergic activity, as in fight-or-flight response, as in – you guessed it – what my corticosteroids are for. Whenever I’m admitted, I’m always switched to IV steroids so that my body can cope with the additional stress of illness.  Having been discharged a few weeks ago from the hospital, I’ve had some pretty recent exposure to high-dose IV steroids which allowed my cataplexy to stabilize enough for me to go home and resume oral steroids at a higher (than my usual) dose.

The following morning, I discontinued my omeprazole, reduced my night dose of prednisone, and cut back on physical tasks so that my lower corticosteroid intake can get me through the day.  (WARNING: don’t try this at home!!! Please consult your doctor before you alter your medicine dosage.  I AM a doctor so I do have a valid license to mess with my meds…and I have the safety net of being able to send an SMS to my Attendings to run it by them.)  Wooh. Okay. It seemed to work, and my spasms were back to their original threatening-to-cramp-but-not-really-happening nature.

Needless to say, I’ve almost completely forgotten my friend’s suggestion until I came across this today:

bac-for-nc-group

Baclofen and spasms AND narcolepsy? :O A possible alternative for Xyrem? :O

I still have to look into it, but one thing’s for sure: I’ve got some homework for the long weekend.  🙂

homework

Defining “Weird Health Issues” Part III: Adrenal Insufficiency (last na, promise)

Based on the lab results, the Endo team also diagnosed me with primary adrenal insufficiency, a condition where the adrenal glands (the ones that basically enable your entire body to function during stressful situations) can’t make enough adrenaline to initiate and maintain the fight-or-flight response.  So instead of gearing up when my body needs a boost, I’ll end up vegging out a.k.a. cataplexed a.k.a. temporarily paralized.  It sounds pretty weird, and it feels even more weird than it sounds.  As in I’ve had moments where I’d completely collapse in the middle of something – standing, sitting, talking, eating, doing the laundry, ANYthing  — and just fall to the floor.  The worst part is, my brain is completely awake.  I can hear everything and remember everything, so I get the bonus of feeling extremely embarassed when I cataplex in a public place (e.g. parking lot of UP Town Center, grocery, my daughter’s school play – been there, done that >.< )  On top of that, I can also FEEL everything.  Once, I cataplexed outdoors and it was nighttime, so nobody at home saw me.  I was on the grass unable to move for a few minutes, feeling a bunch of creepy crawlies on my arms and legs.  *shudder* Hassle!!!  I like how the medical staff are very considerate of that fact ever since I told them about it, so even if I’m completely defenseless, they’d tell me everything that they need to do (pinch, poke, insert needles, sternal rub, etc.), they try to keep painful stimuli to a minimum, and apologize in advance (and also afterwards when I’m more responsive).  I really appreciate their sensitivity.

My adrenal insufficiency is actually just part of a bigger endocrine problem – autoimmune polyglandular syndrome.  Based on my history of having an autoimmune thyroid problem + narcolepsy with cataplexy (also autoimmune in nature) + minor allergies and food allergies during childhood (hyperreactive immune responses) + late onset/ acquired (as in not congenital = since birth) adrenal insufficiency = Autoimmune Polyglandular Syndrome.  It’s basically a syndrome where any organ that produces any hormone in your body can get attacked by your own antibodies and eventually pffft out.  That also raises the possibility of having other autoimmune problems like multiple sclerosis, diabetes, hyperparathyroidism, premature menopause/ ovarian failure, etc. in the future.  I have to admit, it looks pretty dismal…and that is why I have armed myself with a few key verses from the Bible that remind me that God is good all the time and that I can count on His Spirit for the strength and courage that I know I will not be able to manufacture on my own.  These are the verses that never fail to soothe my fears right away:

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”Jeremiah 29:11 (NIV)

For God did not give us a Spirit of fear but of power and love and self-control.2 Timothy 1:7

There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.1 John 4:18 (NIV)

 Those are my “weird health issues” so far.  I’ve been having some additional symptoms that I haven’t attributed to any of my existing diagnoses yet, so I made a category for them here on my blog, in the hopes that I’d be able to figure them out eventually, or get some nuggets of wisdom from other people who have had the same experience or are familiar with these rare diseases.

If you’re curious (I was, so I looked them up… research is right up my alley, anyway) as to how rare these conditions are, here’s what I’ve found so far:

  • Prevalence of Narcolepsy with Cataplexy: 25 – 50 cases per 100,000 (in Western countries); no data for our country
  • Prevalence of Autoimmune Polyglandular Syndrome Type 2: still looking; adrenal insufficiency is a rare component disease, usual component diseases are Type I diabetes and autoimmune thyroid disease
  • Prevalence of Primary Adrenal Insufficiency: 100 – 140 cases per million (in Western countries), incidence: 4 cases per million per year in Western countries; no data for our country

Me: BINGO!!! It’s like winning the opposite of the genetic lottery. Hay. But the bonus is this: after everything that I went through, my faith grew more and more.  There’s nothing like back-to-back(-to-back-to-back) problems to really prove to anyone that there is one and only one God that you can count on in any situation.  Rick Warren said it so perfectly in A Purpose Driven Life (reiterated in the devotional series, Leave a Lasting Legacy): “You never know God is all you need, until God is all you have.”

Being sick can be incredibly frustrating at times, especially when I am reminded of the things that I have to forgo for the time being.  I can’t go out and drive by myself anymore (I don’t drive at all nowadays, for safety’s sake); I haven’t tried swimming on my own, although it’s partly because I haven’t had the chance to;  I miss yoga, which I really enjoyed before I got sick; going out of the house has to be well-planned, even for minor errands; most days, I have to budget my energy (based on my current dose of steroids) and rank physically draining tasks according to their level priority; my Things-to-Do list became a Want-to-Do list end eventually, What-Would-You-Have-Me-Do-Today? list.

I’m still working on surrendering my tasks, decisions and overall day to Abba and it gives me peace acknowledging that Someone greater is in complete control.  It’s easier to let unfinished chores slide and complete them another day.  After all, if it were truly important, as in with-eternal-consequences level of importance, I’m sure God would have orchestrated something to MAKE it happen.  How sure am I of this? Simply put, He has a really long (thousands of years long) track record of His faithfulness – The Bible.  That’s why I keep reading it.  I want to know Him more and more.  I want to keep holding on to His promises.  I want His voice inside my heart at all times, to harness my emotions, and to guide my thoughts, words and actions.  Life has never been more complicated, but in all honesty, I also have never been happier.

Each night, I go to bed with a feeling of fulfillment, knowing that each day counted for something.  Along with my newly discovered disabilities, I also found my voice.  I found that the only way to make sense of all this is to try and look at the situation with God’s eternal perspective in mind, get over my all too human emotions of frustration and embarrassment, and write about things that demonstrate Abba’s mighty hand in the chain of events that led me to Him.  And my goal is to reach as many people who need this kind of freedom and love and peace that only Jesus has been able to provide me with.  Abba is omniscient and omnipresent… there is more than enough of Him for each and every person in the world.  It would be a shame (and it feels like a crime) to want to keep Him and the good news of His saving grace all to myself for trivial reasons like wanting to protect my pride or being uncomfortable with disclosure.  After having cataplexed in various situations, I don’t have that much pride left anyway, just mostly humor. 🙂

1God is our refuge and strength, an ever-present help in trouble. 2Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, 3though its waters roar and foam and the mountains quake with their surging.Psalm 46: 1-3 (NIV)

Defining “Weird Health Issues” Part II: Cataplexy

During my stay in the NCCU, most of my neuro labs were normal.  I still had some episodes but they were fewer, so it was harder to correlate them with my EEG (brain activity tracings).  Dr. Toni Rosales (neuro hospitalist) and Justine Yu (neuro resident) were in charge of my case, and they had a sudden flash of inspiration that sent them back to the books when I insisted that I was aware of everything during my episodes.  One of the key features of seizures is loss of consciousness, and my claim of awareness plus the lack of EEG abnormalities during episodes go against seizure as the diagnosis.  They also reviewed the circumstances that triggered the episodes, which were emotional excitement and laughter.

Cataplexy is a neurologic condition associated with a sleep disorder called narcolepsy, where the normal mechanism for switching your body “off” during sleep (a protective function of the brain so that you don’t act out your dreams and end up hurting yourself) becomes dysfunctional.  In a nutshell, my brain accidentally turns my body “off” at random times, even when I’m not asleep.  It’s like the opposite of sleep walking, so I guess it’s walk-sleeping? 😛  When my overall condition became more stable over the next couple of days, we were able to notice that each episode was precipitated by certain triggers.  In the first few hours after I got out of my diazepam daze, I was so hungry because I haven’t had anything to eat or drink ever since I was admitted (a day or two days ago?).  I got so excited when my nurse brought in my food tray, that I slumped over the table the moment I was about to reach for my dinner and woke up with a feeding tube down my nose 😦 Bad trip!!! Pretty funny now that I look back on it, but seriously, I never knew that nasogastric tube insertion was such a pain in the a*…um…nasopharynx. >.<

Doc Toni and Justine tested their cataplexy hypothesis when my friends, Gem and Kaye, (surgical residents) dropped by.  Doc Toni instructed them to make me laugh while the EEG leads were on, so they can monitor my brain waves in case they triggered an episode.  Their scheme was a success.  They made me laugh so hard (and it still kind of gives me the giggles even now) when they told me that it was too bad I was already awake, because they originally planned to pull a prank on me by putting all sorts of surgical devices on me like a colostomy bag (used to drain poop in intestinal bypass surgeries), surgical drains and whatnot so I’d completely freak out when I woke up.  Thanks a lot, true friends forever talaga kayo!

So by that time, the Neuro team was leaning more towards a diagnosis of narcolepsy and cataplexy instead of complex partial seizure.

Defining “Weird Health Issues” Part I: My Medical Adventure

I originally posted an unfinished draft of this post by mistake and pulled it out to complete it, only to realize that it’s a pretty long story (like all my stories…daldal eh, hehe).  I’ve decided to break the post into three parts to make it more digestible.  Bear with me, it’s kind of complicated.

Before anything else, I’d like to disclose the fact that I am a medical doctor, just your average run-of-the-mill GP (general practitioner).  When people ask me what my specialization is, my usual jibe is “Patient.  I’m a doctor who is currently specializing on how to be a good patient.”  I graduated from Medicine and passed the Physician Licensure Exams in 2011, practiced in several clinics as a moonlighter (our term for freelance GPs taking up reliever posts and other odd jobs) for 5 years and am now working from home as a medical writer/ researcher for an international corporation that caters to pharmaceutical companies.  Again, this is no humblebrag opportunity, I just wanted to clarify that I’m not some Quack pretending to know a lot of medical things to weave incredible faith stories.  I want to get that out in the open so that skeptics/ agnostics/ atheists will know that faith and science/ reason are NOT mutually exclusive.

Growing up, I was as healthy as a horse…a horse with some minor food allergies and allergic rhinitis, and a couple of head trauma incidents, that is. 😛  The only relevant illness in my medical history was Grave’s disease, an autoimmune thyroid dysfunction that causes the thyroid to release excess thyroid hormones (i.e. hyperthyroidism), which in turn causes increased metabolism.  I had my thyroid ablated in 2007 and have been on thyroid hormone replacement for years.  Steady lang.  Oh, and appendectomy…the only time I was ever admitted in a hospital before was when I underwent appendectomy. We caught it early, so it was a minor thing.

And then recently, things became out-of-this-world weird.  Being a doctor, I usually try to self-diagnose and self-manage before seeking my colleagues’ opinions (sakit talaga naming mga duktor yan).  Having some medical training helps in that when you start entertaining the possibility that you might need emergency care, chances are, you (DO need) should’ve gone to the ER eons ago.

Feeling Like a Malingerer

My medical adventure started in July of this year, when I had to be brought to the ER after having been found unresponsive on the floor for an hour.  I could hear everything but could not move AT ALL.  I could hear the Lifeline responders saying that apart from my slow heart beat (averaging at 40’s when the normal range is 80-100 beats per minute), it looks like I was just asleep.  My BP was okay, my blood sugar was slightly on the lower end of the normal range, and the physical exam was unremarkable.   I was breathing fine and was even able to swallow when needed (yey no drool, thank You Lord for leaving me with a little bit of dignity!).  I tried to open my eyes to let everyone know I was okay, awake and aware, but my eyelids just made these annoying fluttering motions that wouldn’t stop until my sister put her hand over my eyes.  Since I seemed pretty stable, they waited for my husband to get home (he headed home as soon as my sisters called him) before bringing me to St. Luke’s Medical Center, QC.  Oh yeah, I graduated from St. Luke’s College of Medicine and had my internship at SLMC QC, so it’s like my second home.  Well now it really feels like a second home, given all my admissions in the past four months 😛

I was able to move by the time we arrived at the ER, so I was horribly mortified and seriously wanted to turn back, especially since I knew some of the residents on duty at the ER at that time (Hi, Keith!).  We even traded a few hirits along the lines of “Hinimatay? Kailan LMP (last menstrual period) mo?” which I refuted with a resounding “CHE!!!

Everything seemed back to normal until I was about to transfer from the stretcher to the ER bed.  I suddenly had that sinking feeling again and my whole body was started to get really heavy.  I had just enough time to call Karlo’s attention before my eyes closed.  My mind was wide awake, racing with a million thoughts and panicking at that point.  Again, I couldn’t move, couldn’t open my eyes, couldn’t speak.  Every time I tried to do anything (open my eyes, wiggle my toes, anything), nothing happened except that it felt like my brain was getting strained and I was starting to get a headache with the effort of trying to move.  So I kept still and prayed because really, what else can I do, right? My prayer was along the lines of, “Lord, ano ‘to? Arte lang ba? Naririnig ko sila. Kung arte lang ‘to, pwedeng paki pitik naman ako? Nakakahiya na eh!”

For a while, nothing happened.  And then about 3-5 minutes later, my limbs started feeling lighter and I was able to open my eyes effortlessly.  Karlo was waiting by my side and some residents started taking down my medical history.  I was able to answer for myself but in the middle of it, I had another episode.  So weird. The rest of the day was essentially like that — being able to answer a bunch of questions a few minutes at a time and having a couple more episodes of temporary paralysis, lasting for about 2-5 minutes each time; physical exams, neurologic exams, blood extractions, IV insertions, etc.  I heard Karlo and the other doctors trying to decide on which service (specialization) I should be referred to, given that my blood work was still in process and the only other observable abnormality was bradycardia.  We ended up having Cardiology as our main admitting service with referrals to Neurology and Endocrinology.

I was referred to Dr. Geri Mariano, a young and energetic neurologist, whom I already knew from medicine days.  I remember her proctoring our Neuro exam when she was a resident and I was in third year.  She is also in charge of the Neurocritical Care Unit (NCCU) in SLMC so we had some pretty recent interactions back when my dad was in the NCCU.  While she was interviewing me, I had another episode and she noted another seemingly minor thing — my pupils were dilated but briskly reactive.  It was easy enough to confirm that they were dilated only when I was having an episode, given that I was out every 5 minutes or so that day.  The neuro team’s initial impression was that of a complex partial seizure, so I was given IV diazepam with every episode, which was becoming more and more frequent as the day wore on.  Let me just say that IV diazepam is a nightmare! Ang hapdi sa ugat!  Plus I didn’t like the drowsiness that came with it because I had a hard time keeping track of details because benzodiazepines mess with short term memory.  I remember being asked if I knew where I was and whether I can recall people’s names, and I remember how embarrassed I felt after having said “Yeah, of course I know where I am, and I know who you are!” with indignation, only to blank out.  Bangag!

I remember waking up with a jolt in the NCCU because of the pneumatic compression stockings (device that regularly inflates and deflates automatically to sort of massage the calves used to prevent deep vein thrombosis in patients on prolonged bedrest) and thinking, “NCCU?! Nilagay niyo ako sa NCCU, grabe naman! Baka arte lang ‘to, NCCU agad? At OMG bakit ako may pneumatic compression, na-stroke ba ako?!”  I find it pretty funny now, but the level of panic, confusion and embarrassment I felt then was so disorienting at the time.  I couldn’t understand what I was happening and my symptoms were so weird, so my logical conclusion was that nag iinarte lang ako.  Talk about poor insight, haha!

The other details of the next couple of days were hazy because I was in and out of consciousness, thanks to diazepam.  I can remember waking up a few times whenever family and friends visited, and I remember waking up late at night one time because Karlo was crying by my side and I wanted to reassure him that I’ll be okay except I was too groggy to speak, so I just patted his arm.  Good thing our med friends dropped by at that time…I felt much better seeing him being hugged and comforted by close friends when I was too vegged out to do anything.

Puzzling Symptom #3: Random hematoma?

My left calf & foot have been feeling a bit funny today, sort of tingly, sort of crampy. I’m a little embarassed by my symptom description, being a doctor and all. I know that what I just said is NOT diagnostically helpful at ALL 😂 That’s just really how it feels 😬

So yeah I’ve been ignoring it all morning, since it’s pretty vague & not that bothersome. I was surprised to see this bluish lump on my calf when I crossed my leg to sit Katie on my lap. It looks like a cross between a hematoma and a superficial venous thrombosis. I still can’t decide, but will monitor. I had a cataplectic episode yesterday, but I don’t remember hitting my leg. Luckily, I was able to make a beeline for the beanbag before falling face down. Good job ka, beanbag!! 😁

¯\_(ツ)_/¯ Insights? ¯\_(ツ)_/¯img_6952img_6951