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

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