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.

Holiday blues

I'm on holiday in Bali, because I wanted to go away, come back and start anew.  Today is my last day here, but I am feeling blue.  I'm trying to enjoy it but this stupid pain caused by stiffness in my upper back is making me feel down.  This flare up is still affecting my ribs, my back and now my neck.  I'm frustrated!  Even sitting myself down onto the deck chair riddles me with pain. 

And my frustration all culminated with incompetent staff at the Grand Hyatt.  Honestly, I expect more here.  I go to the pool bar to order a coffee.  I wasn't sure if they have it so I asked the waiter "do you have iced coffee?".   He doesn't seem sure, so he goes around asking a few of his colleagues.  I hear him repeat the word "ice coffee" a few times.  After which, he turns around and starts instructing some other waiters to pack up the fridges.etc.  I waited...waited...waited... And he continues to ignore me standing there.  I look at him, half expecting him to notify me of whether they have iced coffee or not.  He doesn't.

Finally, I ask "so do you have iced coffee or not?".  "Oh yes ma'am, we make it at the restaurant, not here.".  I felt like killing someone ... "So when were you planning to tell me that?". "Oh, we are already preparing it!".

What?  They took my question for an order?  And they didn't ask how I wanted it...  "Oh?", I said, "how are you making it?".

"Black with sugar.".

"Really? In that case, I don't want it."

"Oh so how do you want it ma'am?"

....so now you ask me.  I was about to blow up.  I contained myself ... I don't want to engage with them anymore.  I don't want the coffee anymore. 

But that episode got me all riled up.  I don't think I usually get so angry at these little cock ups.  But I'm angry and close to tears.  I just couldn't believe how a 5-star international hotel can have such screwed up service.

As I came back to my deck chair and eased myself back down painfully, I finally realize the source of my frustration is not the wait staff.  It's this intolerable pain that Just. Won't. Go. Away. 

I just want to feel normal again.

Without the stupid pills.

Be able to take a long, deep breath.

Not trip over and then feel jarring pain through my spine.

Be able to turn around and see behind me without having to swivel my entire body around.

Don't even talk about running. Or jumping. 

But for now... I'm taking the pill.  I can't deal with it. 

All In One!

Did I mention that rolling out of bed was an impossibility last week?  Well, I went off Arcoxia after last Wednesday since I felt better after second dose of 120mg.  I also did a session of acupuncture then. 

But yesterday, the flare up came back and was at full force this morning when I (once again) could not roll out of bed.  I had to succumb to sliding awkardly.  Thank God my bed is high enough for me to slide and still be standing. 

But! My RIGHT eye (how unusual because its usually my left eye) flared up yesterday morning as well. 

How miserable I was yesterday with flare up on my spine, ribs (breathing was difficult) and right eye feeling pain and swollen.  Good thing the eye doctor had given me some Pred Forte for standby for situations like this.

This morning, I was only able to take shallow breaths because my ribs are so inflammed and stiff that it is restricting the expansion of my lungs.  Walking normally was also a challenge.  A colleague even asked me if I was in pain today... I guess it had reached a point that it has become apparent to others. 

I got me some Arcoxia 90mg - also known today as my "Happy Pills".  It took more than an hour to take effect, but thank God it did! I'm walking normally now but still have some dull pains on my back and ribs.  But at least it is manageable.

On the past weekend, I felt like I might be falling into a mental breakdown.  As I prepared my Chinese herbal medication, I slid onto the kitchen floor and sat there tearing up from the physical pain, the tiredness, the exhaustion, emotional turmoil from a deeply personal matter that occurred a month ago, from the stresses at work.  I sat there tearing, staring into space, stirring up my Chinese medication. 

Which is why, although I was never a believer of taking the anti-inflammatory pills (Arcoxia), I felt the need to be free of pain, as I didn't think I could mentally manage the chronic pain plaguing me day after day. 

120mg Arcoxia worked, a little

Just for the record, major flare ups started last Friday.  I could hardly breathe as my ribs were extremely stiff, the whole round from back to front.  It made movement almost impossible and I was waking from sleep from intense pain.  I believe it's due to high emotional and physical stressed that I am experiencing due to a life changing event.  In any case, I can't believe that even after taking the highest dose of Arcoxia (anti-inflammatory pills), I still feel stiffness and pain.  Usually after this pill, I feel back to normal.  Hopefully, after a few more days of 120mg, the inflammation will be contained.

Anyway, last November, I had an attack on my left eye getting ultra inflammed as well.  Found a new eye doctor at eagle eye clinic. 

Time flies and I'm thankful

It's coming to a year since I did the standard chartered half marathon in 2013.  At that time, I pushed myself and the flare up came fast and hard, and I think that put me out of action for months.  Since then, I've taken things slow and this year has been a relatively good year for me.

I can't believe how time flies though.  The year is almost over, where did it go?  Right now I'm sitting in a cab, heading back to the office from an appointment. Passed by Singapore General Hospital and I was awashed with memories of sitting in the SNEC (Singapore National Eye Centre) waiting my turn for consultation.  In one year alone, I was hit by the iridocyclitis flare up twice.  And this year, I was free of those flare ups.  Indeed I am thankful!

This year, I had occassional flare ups of the joints.  But they were mild and extremely manageable.  For that too, I am thankful.

It has been a good year.

Iridocyclitis

Now, I'm not sure if I have ever mentioned that Ankylosing Spondylitis sufferers have a high chance of suffering from uvetis also.  Simply put, people who suffer from joint inflammation conditions will be prone to inflammations of the eye as well.

Last year, I had some serious bouts of red eyes and every General practitioner (GP) I visited all boiled it down to  conjunctivitis or some kind of eye infection.  Only when the eyedrops they prescribed made my eye worse & not better, I realized it was something more serious than conjunctivitis.  My left eye was red, swollen, teary and hurt A LOT. 

Finally, after visiting the eye specialist (Prof Arthur Lim) at Gleneagles Hospital, I was diagnosed with Iridocyclitis. 

Wikipedia describes it as:

Uveitis is, broadly, inflammation of the uvea. The uvea consists of the middle, pigmented vascular structures of the eye and includes the iris, ciliary body, and choroid.

Anterior uveitis, also known as iridocyclitis and iritis, is the inflammation of the iris and anterior chamber. Anywhere from two-thirds to 90% of uveitis cases are anterior in location. This condition can occur as a single episode and subside with proper treatment or may take on a recurrent or chronic nature.

I thought about it...which is harder to bear?  The painful teary swollen eye and blurry vision, that always causes me to have headaches?  Or, the intense pain throughout my spine and ribs that make movement difficult?  I can't decide, they are both just as bad.  They both somehow restrict me from leading a normal life. 

You must be wondering... Why a post after 3 months of silence? 

I admit, in good times, I never feel the need to blog.  I have been having a good spell and even participated in the JP Morgan corporate challenge last month, completing 5.6km, and doing myself proud with a time of 34minutes! 

As you can guess, a post must mean something bad has happened.  Well, my RIGHT eye went red and swollen yesterday, and it hasn't gotten better today.  I'm not 100% certain if it's just a sore eye or iridocyclitis coming back to haunt me.  I had 2 eye flare ups last year (or was it 3), and those flare ups got me really down.  It was not easy to bear at all.

I'm also experiencing some mini inflammation in my neck and spine, but this is easy to bear compared to the hell I went through last year.
 
Praying hard that my eye isn't going through relapse!