God and my ankylosing spondylitis

When I was battling this AS a couple of years back, I was firm in my faith that God had a purpose in everything.  My faith never wavered and each time I faced difficulty, a song rang in my head - Great is Thy Faithfulness. 

This verse particularly resonated with me:

"Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!"

Strength for today!
Bright hope for tomorrow!
Blessings all mine,
And ten thousand more blessings to come.

Yes, I had that blessed hope that tomorrow will be better, my future is in God's hands.

Sadly, I seemed to be on losing ground in this battle.  I lost my positivity, and my faith was shaken.  And I don't know why, but each time I hear the chorus of this song, my tears well up.

"I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side

The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

And nothing formed against me shall stand
You hold the whole world in Your hands
I'm holding on to Your promises

You are faithful
You are faithful"

All of a sudden, I realize why this song spoke to me so much.  And I mean right now, this is the moment that realization hit me. 

Because even if we lose our faith in God, HE is still faithful to us.  I was losing the reason to continue seeking God's face, I was falling down into a deep dark hole of self-pity... But GOD is faithful.  He will draw us back into His arms.

How did He do this for me?

3 weeks ago, I bumped into a friend whom I hadn't seen in a couple of years.  He was visiting my office with a mutual friend of ours.  We exchanged pleasantries and I asked how he was doing.

He told me he'd lost a lot of weight in the last couple of years due to a new diet he was trying.

I told him he didn't need to diet, he was slender enough as it was!

It turns out that he was trying out a diet to help deal with a condition that he had.  And it turned out to be ankylosing spondylitis as well.

He told me it was such a relief and felt so good to find a fellow sufferer.  Not that he was glad that I was suffering too, but it just felt less lonely knowing that someone out there knows exactly how he feels. 

I felt the same way, it was a feeling of support and empathy that really lifted me.

The next week after that, a client noticed something amiss as I entered their office.  He could tell I was a person walking as though I was in a lot of pain.  My flare up then (and now) affects my neck the most, and I am unable to move it left, right or look down without feeling some kind of jolt of pain. 

I found out he could empathize because he suffers from cervical spondolysis - which is the degeneration of the joints in the neck.  What he described sounded much more painful than what I was going through.  He said he had even reached a point where he could not get out of bed, had to get an ambulance and was on painkillers steroid drips in the hospital.

The bottom line is this, coincidence that I keep meeting these people?  I don't think so.  God put around me people who could empathize.  He is reminding me that I am not going this alone!  He sends his angels to watch over me. 

So there's nothing to worry about, because God holds my future, and He is beside me each step of my way.

Matthew 6:25-33
“Therefore I say to you, do not worry about your life, what you will eat or what you will drink; nor about your body, what you will put on. Is not life more than food and the body more than clothing?  Look at the birds of the air, for they neither sow nor reap nor gather into barns; yet your heavenly Father feeds them. Are you not of more value than they?  Which of you by worrying can add one cubit to his stature? “So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin;  and yet I say to you that even Solomon in all his glory was not arrayed like one of these.  Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you, O you of little faith? “Therefore do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’  For after all these things the Gentiles seek. For your heavenly Father knows that you need all these things.  But seek first the kingdom of God and His righteousness, and all these things shall be added to you.  Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.

All Things in Moderation!

Ankylosing Spondylitis, a disease with good days and bad days.

If you know me or had followed my story since I started telling it in 2013, you would have figured out that I *LOVE* running and am (was) a pretty active person.  In the last few months, I hadn't really managed a run.  The last time I did a proper run was in December 2014, where I attempted a 10km run at the annual Standard Chartered run.  (I can't remember if I'd blogged about this before...)  I was stubborn and pushed myself to do the run even though I had some tinkling pains in my SI joints and completed 10km in the LONGEST time ever I had taken to run 10km (1.5hours).

I've done quite a bit of self reflection recently.  I realize that I am competitive by nature, and that is partly (or fully) why I love running so much.  I always want to outdo myself, outdo my last personal best, outdo the last distance I was able to accomplish.  Even with a mini flare up, I stubbornly turned up at the starting line of the 10km race and pushed myself to finish.  Bottom line is - I must accomplish the goals I set for myself!

I thought back further and realized that I had stubbornly popped anti-inflammatory meds, so that I could compete in and complete the 21km Standard Chartered Race back in 2013.

I medicated myself daily with Arcoxia during my Nepal trip in October 2013, so that I could trek the Annapurna Trail.

And most recently, I medicated myself daily on my trip to Iceland, where there was also some trekking and lots of walking involved.

Each and every push mentioned above was done *DURING* a flare up.  Worth it?  In some sense, YES.  Because I achieved a goal each time.  

But I was ALSO rewarded each time with a mighty and powerful flare up after.  (Also because I refused to continue on the meds after I had accomplished my goal - again, stubborn, since I did not like "being dependent" on my meds.)

On a more recent and simple example, as I am currently battling with my all-time worst flare up, I had a GOOD day!  What I mean by good day is - although I still feel pain - I am still able to move about in a relatively mobile fashion.  My steps were quicker, and my back was more flexible.  I still had those stabbing pains each time I turned my neck....but it was a GOOD day!  And all this, without meds!  *Joy!*

And what I did on my good day - took a 30 minute walk with my dog in the park, swam as many laps as I felt I could, went for acupuncture, bought fruits from the supermarket (heavy) and went out for a movie at night.

As you can imagine, I had a massive flare up the next day.

Which got me thinking... I have to moderate myself!  I will now be the first to admit that I am the queen of self-denial.  I still thought I could be normal, and do all the normal things I used to be able to do - run, jump, swim - with no limit.  

But you know what?  I'm NOT normal, I have an auto-immune disease which gives me pain and fatigue and on some days, emotional weakness.

And it's OKAY.  I think I've finally come to terms with it, and new realization dawned upon me -  I need to know my limits, and adhere to it!

And it will be like running.  When I first started running, I could not run more than 3km.  Slowly but surely, I could increase my distance and stamina with each run I did.  Likewise, when I swim now, I will start with maybe 10 laps, then increase a few laps each time - up to a point where I do not experience bigger flare ups the next day!

Remember, all things in moderation and you will be fine!

Laughter

My Osteopath told me last Saturday, that laughter is great medicine and would inject some great positivity into my life and perk me up in my pain.  This was as she recommended me to watch the movie "Pitch perfect".  I groaned and replied saying "once it doesn't hurt to laugh, I'll watch it.".

In my previous post, I wrote about the extent of pain that spiraled me into a black out.  After that wake up call, I realized that it was futile to try to overcome the episode on my own.  After all, this condition is caused by my very own immune system army going rebel and attacking myself.  How much could I hope that my body would then realize its mistake and stop the attack?  I didn't know and I wasn't ready to find out, so on I went back onto 90mg arcoxia. 

When I think back, I think this is the most arcoxia I've taken... And I honestly like to think that I bear with the worst possible pain before giving in to those pills.  So this is telling me that things aren't getting any better.

After 6 consecutive days of popping arcoxia (and by the way, still being able to feel the dull pain through it), I was ready to stop.  Last Friday (almost a week ago now), I stopped.  Slowly but surely, the pain eased back in as the effect of the drug wore off.  But I persevered.

Just to backtrack a little, because I want to highlight a bit of background.  In my first major flare up, my sacroiliac joints were the most affected, impacting my ability to move short distances from living to dining room.  In fact, I was totally delibitated and struggled to move around.  That time, I took one week off work cos I could hardly move. 

The second time I had a major flare up, my spine was affected the most.  The main hindrance was getting in and out of resting positions.  Sleeping was a nightmare because it hurt.  Waking up in the morning was a worse nightmare because it hurt more!  But after nice long hot showers in the morning, I was able to function and walk about stiffly all day.  That time, my ribs felt sore and breathing was difficult because they got really stiff too and restricted my rib cage expansion.

Right now, I'm experiencing my third major flare up.  The first incidence of it was in mid - March, almost 3 months ago.  In between I saw a new rheumatologist, went back for regular TCM and found an osteopath. 

The rheumatologist did a blood test and found my inflammation markers reading to be super high and pronounced my x-ray results as "Bad Bad BAD!!!", all while pointing at different parts of the spine and SI joints.  She then tried to put me on the TNF blockers, but they cost SGD$3000 a month, and I had to self administer for at least a year.  I wasn't too turned on by that idea. 

My TCM (traditional Chinese medicine) acupuncture doctor always looks at me sympathetically and asks if I'm in pain, and after each session asks if I feel better.  I like her because she cares.  My problem is I understand too little of this process, and all I know is that TCM is not meant to be miraculous.  It's supposed to be regular treatment which target at the root of the problem, which also means slow healing/recovery.  Each treatment is accompanied by a week's worth of powdered Chinese herbs to consume on a daily basis.  They don't taste great, but they are good for you.

Finally, I found an osteopath after being recommended by my cell group friend to try it out.  Osteopathy is an alternative form of treatment which emphasizes the physical manipulation of the body's muscle tissue and bones (quoting from Wikipedia).  She's really nice and I always feel better after seeing her.  Plus, she gives great advice too. 

Anyway, back to my third major flare up which I am experiencing now.  I'd gone off arcoxia last Friday and by Monday night I was back in hell.  I had a completely sleepless night because every slight move triggered indescribable pain and woke me.  I never knew this was possible, but each time I swallowed, it hurt!  This is because this flare up is attacking mostly my neck and trust me, it's impossible to find a comfortable sleeping position.  On Tuesday morning, I woke up in tears of pain.  Lo and behold, as I squirmed myself out of bed, I realized my SI joint on right side was also in pain!  Hooray.  Luckily, a long hot shower and an agonizing walk with the dog later, I could pretend to be normal and go to work. 

But it has really been a huge struggle just going to work.  I work in sales and a lot of my job requires me to go into client meetings with a laptop.  When I look back on those days where I persevered, went into work in pain, carried the laptop in pain and conducted a meeting in pain, I'm not sure how I did it.  You know, I hadn't used the F-word to swear in a long time... But when I was sharing my difficulties with a dear colleague of mine (who knows of my condition), I swore.  I said, "this is really tough trying so hard to keep my performance up.  I want to pull my sales numbers up, and that means more demos, and more demos means more meetings where I have to bring the laptop.  The laptop is F-ing heavy, I can't manage it!" ... As my eyes brimmed with tears.... 

Yes, very dramatic.  But I was really just right at the edge of losing it.

And by the way, the laptop is one of the lightest ones around. It just feels like a tonne when you're riddled with pain with every step and turn of your head.

On the BRIGHT side, this morning I awoke with a smile on my face.  Because, somehow, the pain reduced to a dull ache and I could actually walk briskly!!! The simple pleasures of life. 

And I'm one step closer to laughing. 

Smiling this morning changed my whole day.  I was more positive and chirpy and I had hope! Hope that I will get through this episode.

Black out pain

I never thought this was possible but last Saturday, I took my dog to the vet. While on leash, he got excited and tugged at it.  This sent such jarring pain through my whole neck that I blacked out for a second. 

Last Friday was crazy intense for me, I had to go for a meeting where I had to bring my laptop along.  Because I was already experiencing such pain in my back and neck, just getting to the meeting was a great challenge.  The flare up came back with a vengeance since I stopped Arcoxia since the previous Saturday.  By last Saturday, I was in tremendous pain, where every single movement hurt, from turning to walking to breathing to anything.  Every friend and stranger asked me I'm ok, they could see the pain on my face. 

So by Saturday afternoon, I popped an Arcoxia 90mg. Better but not gone.  Been taking the arcoxia 90mg these past 5 days but still feel the pain through it.  Rheumy upped me to a 120mg dose to take daily for 28days.  Seems drastic.  Wondering if there's any way I can avoid that?

Haven't started taking it... Will see how things go.