The night I slept...

Last night, after a very long demanding weekend and I guess an equally long and demanding week... I got home about 8pm and by 9pm I dropped on bed, absolutely exhausted... but happily so. I smiled so hard on the inside knowing that I didn't have to wake up to face any Monday type modes of normalcy and for that moment my entire being resonated with appreciation.

I then got a sudden feeling of I have no idea what. I took a deep breath and closed my eyes and I swear to God, I could hear my eyelids sweep over my eyes and hear the muscles contract as I closed them even tighter and then like a wave passing through me, I felt every single pore raise, starting from my eyes, down my face, neck, chest, arms, hands, stomach, pelvis, thighs, legs to my toes... then back up to my head. My entire body was just a mass of tingling electrons for a few seconds...

*exhale* I pulled my blanket over me, rolled over to my side, snuggled nicely with my pillow and within moments I was fast asleep.

I woke up 16 hours later

My belly is hungry & my heart is soft

I've somehow spontaneously developed a ravenous hunger a few nights ago. An actual physical hunger, that I just must eat. I know sometimes I would say that 'my belly hungry but I not feeling to eat' ... but now I find myself feeling to eat with a hungry belly too! I can't even blame it on the drugs... Let's call it the beginning of PMS :p

In the meanwhile, I am so very sleepy right now, that I am getting 'car sick feeling' from the effort of just being awake typing this.

To end this, I am a softee, but it's because I love. Love itself cannot hold onto amour and I lack the protection of wit.

Go ahead

I wrote this last night & clicked on 'save now' instead of publish so I can save myself by saving another:

Fu(k it! For once I am going to ALLOW myself to just feel sad if that is how I feel. Who cares the reason? Why rationalize it? Why fear it's ramifications? For once T... just feel. It's ok. Cuz God knows how much pain I'm holding in

Never again

I did something... and I don't ever wanna do it again!

I did it willingly.

I think it's the universe's way of helping to obliterate this obsession that was taking me over. Trust me when I say this, I had no logical way to stop it since it in itself was illogical... that need... that fixation that haunted me constantly. I never could have possibly conceived that I would feel like this now.

Now I'm sick to the stomach. Disgusted. I can smell it. I want to retch.

I want to burn it all away. Wash it all away. I want to change the air and everything it touched

No more. No regrets. Thank you universe. Just no more.

Divali 2010

Tomorrow is Divali! Well it's today to be exact, considering it's after midnight. I'm already on bed and thinking to 'call it an early night' for a change. I suspect it's going to be a long day and night ahead.

Divali is supposed to be the darkest night of the year right? Considering that, I don't think I have ever in my entire life really experienced the darkness of that night. It's the one night that is guaranteed to be splattered with lights near and far. Maybe that's the point of it. Removal of darkness.

May this Divali remove the darkness and sadness in our hearts.
May the light illuminate our souls and touch those around us.

Normality... is subjective

The night has come to an end. It's late, it's time to finally get some sleep.
You brush your teeth and smile at the mirror admiring how clean they look.
You wash your face and pat it dry feeling clean and refreshed.
You put on night cream and lip balm, brush your hair and place everything back on the counter.
You see a rubber band. It's new. It's clean. It's pretty.
You find a syringe, sealed.
You take them both in your hands, place the bowl lid down, sit and wrap the rubber band around your wrist.
You double it. It's tight. Very tight.
You let your arm hang. You slap it gently. You watch the veins rise to the skin
You touch them lightly... feeling the pulse
You take the syringe out... you undo the suction
There is a vein passing over your knuckles to your pinky finger. It's big
You touch it. You press it... you feel the resistance of the blood pressing back
You take the needle and position it firmly in your hand
You latch your fingers around the end and turn it so the hole is facing upwards
You place it on the vein... and push.
It pierces the skin. Effortlessly
Tiny stream of red flows into the cylinder. You are in.
You pull and watch the blood slowly flow out... and in.
You pump the needle in deeper. You feel no pain.
You pull for more blood and watch the cc's climb
You want more but there's only so much it can take.
This is not the movies. This is not a doctors office.
You pull out! The blood shoots out with massive force, leaking everywhere.
Your vein is open if only by a tiny hole.
You pull the band off, quickly and just watch the red liquid flow... and drip and drip...
And with a sudden urgency with no warning in sight, you clamp down the swollen vein and stop it!
Blood is leaking under the skin. It hurts now. You don't care
You take the syringe and face the mirror. You let the blood drip from it, drop by drop.
You watch it fall.... onto your hand, into the sink, onto a napkin, onto your face, onto your tongue...
Drop... Drop... Drop... You taste it
You draw a line of blood onto the mirror and watch it flow down
It doesn't go far... it thickens
You cannot get anymore out the syringe, blood coagulates too quickly.
This is not the movies. This is not a laboratory.
You throw it away.
You touch the blood on the mirror with your finger tips... and smear it on your lips
Red rosy lips. Blood red
You lick them.... suck them... bite them.
You wipe the mirror clean
You wash your hands. The vein is swollen. It's getting blue.
You press it, it hurts.
You smile. Time to sleep.
You watch the blue bruise travel down the vein as the hours and days go by.
You feel the pain.
You see it suffering and it's ok. Everything is ok.
 The hole is gone.
You are ok. Smile.

Everything... it's everything

I never knew it was possible to feel so much. I don't need to understand it anymore. It's unfathomable. I cannot touch it. I cannot hold it. I cannot express it. I can just feel it.
It is me
It is you
It is everything.

I can feel everything! I cannot keep it in me... I am you.
I am everything
and I want everything that I am
I want everything that is you

Can you feel this?

The distraction

Hmmmm... let's see. In about 12 hours from now I would have started my pre-medication to keep me from 'having a reaction' *cross fingers* it works! I have a feeling it'll all be ok :)

Rituximab Infusion part 2 - Here I come!

Tonight is all about distraction. No other reason I would actually find myself 'online' on FB chat. I realised that after the fact though... What else do I notice?

I am shaking my leg constantly... like when I was back in school writing an exam.... I would become aware of it and stop, then sooner than later, it'll start back again

I just bit off my nail... the second one for tonight

I am biting my lip

Yupp... I am nervous. Wow, hell, anyone could have asked me this and there was no way my answer was going to be in the affirmative. I have to stop, step back and observe myself before I can notice and acknowledge it...

Wow I can't believe I'm actually nervous. I am. It will all be ok!

My body wants to be what it is

Wow... my insides have never felt more baby making feelings than they have been over the last 24 hours!
('least not for a long time)
The human race will forever live on, and it's our fault
As equally as it's mine

I am here, I am not

I really forced myself to go out tonight. From the moment I woke up, I knew everything I did would be in preparation for later... and what was everything? Take a load of painkillers and go right back to sleep. I woke up feeling 'better'... I ate, bathed, got dressed, sat in the car and realised 'I really don't want to go anywhere... I really can't make' ..... but I did. I went. I was in soooooo much pain!! But no one would know. I made sure of it.

I confessed to someone (and yes it was a confession in my books since I would never normally admit to it) that I'm really not up to going and he asked "you lost your vibe?" and my answer took some time because I decided on being honest. "I never had it really. It's just been in theory"

The vibe was never really there. It was all in theory. All in wishful thinking. All in riding the impetus of reaching milestones way faster than I should be and some pseudo sense of camaraderie. All in me following through with a promise. All in me being stubborn. It was never my vibe...probably never would be. (I don't even know if  he understood what I said)

I realise that I'm tired. I cannot keep up, in more ways than one, I just cannot keep up. I have been fulfilling the role of 'speedy recovery' . But I'm so so tired.

Tonight I realised that I've been pushing myself, like I have a tendency of doing. Pushing myself too hard.

I am not ready... not for this, not as yet.

The only thing I do want disappoints me over and over again and that's not good. Expectation is the mother of all misery... I know better than to believe, but I do. Something is holding me here. I always find it hard to ask for what I want. This hurts... hard

Wait, what?

I'm sitting here on a nice big comfortable chair, facing the windows on the east of my house. There's a little ornamental pepper plant in front of me and I'm watching the leaves and delicate little branches shaking... it's almost constant. For the first time since September 2nd, I am feeling breeze through this window, the way it should be, the way it used to be all my life living here.

I am sitting here feeling a mixture of sadness, disappointment and anger. My lips are sealed and breathing shallow... forehead and eyes tense. I'm trying hard not to let myself cry right now. *bites the inside of my bottom lip*

I'm sitting here and all that is running through my mind is:

"I'm just waiting, 

waiting, 

waiting, 

waiting, 

waiting, 

waiting,

waiting,

waiting,

waiting..."

That's all I'm doing. If my life was a book right now, the undercurrent theme that everything rides on would be an overwhelming sense of waiting. Patience is my virtue and my vice *sighs*

Rituximab treatment: The unblogged story (till now)

The Infusion Related Anaphylactic Reaction

December 2008 was the first time I had done this treatment and it was also the first time it was being done in Trinidad and Tobago. That was the first time I had an anaphylactic reaction and the first time I had to spend a night in a hospital.

I was a well read, knowledgeable patient at the time having read countless medical journals, case studies and medical trials on this drug, but nothing prepared me for what was about to happen. Now short of 2 years later, it happens again... I may not have been up to date with the latest trials and reviews, but I was prepared to recognize the onset of what would become one of the worst experiences I think someone can have.

Present day:

I rushed down lunch as the docor was ready to start the infusions. I had already been given my panadol, gravol, piriton and 100cc hydrocort. A fellow patient and I began the infusion at 1:00pm. The doctor told me I need to lie down or else the flow would take forever, so I grab my donut dessert and settled onto my bed (which I think btw was made for short ppl). I munch munch on my donut, with earphones on ... munch, swallow, munch swallow, munch, swallow, munch.... swallow?

My ears felt weird? I put down the donut and handed it over to mom who asked me if I was done. I said 'yea, just now'. I took off my earphones and tried to swallow again... it's worst. Mom asks 'what happen?' ... I respond 'something's happening'. Here it was... the beginning. I closed my eyes and counted 10 seconds: 1.... 2... 3.... 4.... 5.... 6.... 7.... 8... 9.... 10 *swallow* ..... omg I cannot swallow!

I called out a nurse and mostly with gesticulations, I told her 'throat, itchy, pain, swelling, cannot swallow'. I must have been about 1 minute now since the onset of the 1st strange ear feeling. She slowed down the i.v. drip and asked if it was getting better... I didn't respond. Because I couldn't. I couldn't talk. The doctor came and ordered it to be 'dc' (discontinued) and immediately hit me up with another 100cc's of hydrocort and chlorpheniramine. At that point, 2 minutes later, I could barely breathe and my heart was racing! My on average low BP was now sky rocketing. Thankfully I had about 1 inch of my passageway open in my throat so I labored to breathe, unable to talk or swallow and unable to breathe through my nose. I stayed calm though... or at least I eventually made myself calm. Put simply, it was very scary.

They started a new bag of saline solution to flush my veins.

All we could do now was wait... I just needed O2 and time. Thankfully I had both. Things didn't get worst... I lay there for 4 hrs after, trying to breathe and stay calm. Trying to swallow felt like razor blades. Trying to talk felt like... I cannot describe. I couldn't talk. Things got better. The infusion was restarted. No more reaction. Doc and nurses checked on me constantly! They were absolutely efficient. Had I not alerted them the moment the symptoms started, my entire air passage way would have closed in and well... it would have been a scene from Grey's or House with throats being slit open and tubes being shoved down. Thank God it didn't reach to that.

5:00pm I could talk again a bit. 5:30pm 2 friends dropped in to see me, one of them brought a mocha chiller! 6:15pm, I was able to sip and swallow my chiller... and never in my entire life had I been more happy and grateful to feel something go down my throat!

10.10.10

I have less than a minute before this opportunity is lost forever... I just have to! Its 11:59pm. The end of 10.10.10

Health care to be grateful for

In light of all the RA flares I've been having post-op, I was scheduled an emergency treatment session of Rituximab infusions at the St. James Medical Complex. Yesterday was part 1 of these infusions. Part 2 will be 2 weeks from now. 

For those who aren't too keen on reading up on all the medical fa la la, Rituximab is essentially a 'smart' drug that's main purpose is to seek out and destroy the body's B cells. The B cells are a very important part of your immune system. With an autoimmune problem, these B cells may be attacking the wrong things (i.e you) so that's why the good doctors and scientists out there created something to 'kill them dead'.

There are so many different slants I can give this story from... I pondered on it for quite some time and blogged each one in my head. Even as I am typing this now, I am not sure which twist/version I'm going to tell. I think... I think... I would give the positive spin version. Here goes:

I don't think people really realise how fortunate we are here in Trinidad to be able to receive free medical care at our public hospitals. I quote:

Citizens can access free health care at public health care facilities where health insurance is not required... Public Healthcare is free to everyone in Trinidad and Tobago and is paid for by the Government and taxpayers (wiki) 

I am infinitely blessed to be able to have access to drugs such as this rituximab, at no cost to me. I verrrrryyyy rarely ever look at things for its monetary merit, but I just had to sit back and take in this moment and really really be thankful and appreciative.

The cost of a single course of rituximab is £3492 (two 1000-mg i/v infusions).

That right there is over TT$35,000 (and that's for a single course. Patients may have to do 2 courses a year to 1 every 2 years).

I also have 2 brand new titanium hips now... another thing done through our free medical system. A single hip replacement surgery costs between US$40,000 to US$60,000... that'll bring us up to approximately half a million TT$ I did not have to spend to do both surgeries.

So all in all, despite all the 'crap' I've had to go through medically over the years ... God knows that I was blessed to have family and friends like I do, live in a country like I do, with doctors like we have and be able to have these surgeries and treatments done without having to sell my soul, car, house and left kidney. 

All we had to do was pay our taxes and I am alive today. 

 

PS: I apologize for the 'gruesomeness' of the i.v. line pic but I couldn't help myself... it's just so bloody awesome! 

Comic Relief

Birthday Love

Love is real, real is love,
Love is feeling, feeling love,
Love is wanting to be loved.
Love is touch, touch is love,
Love is reaching, reaching love,
Love is asking to be loved.
Love is you,
You and me,
Love is knowing,
We can be.
Love is free, free is love,
Love is living, living love,
Love is needing to be loved.

s06e21 House & Cuddy *SPOILER WARNING*

C: I'm stuck ... I keep wanting to move fwd, I keep wanting to move on and I can't... I just need to know if you and I can work

H: You think I can fix myself?

C: I don't know

H: Because I am the most screwed up person in the world

C: I know. I love you. I wish I didn't, but I can't help it

Awake to feel

I've been up since 6am on Monday, though I did get a little nap in the afternoon.
Sleep was about to take me when I got stabbed with joy.

It's astonishing how the desire to transcribe something into the annals of memory can supersede sleep deprivation.

Intensity

I've been having so many strange and intense experiences lately... There seems to be some sort of tear in my being where pieces of my subconscious are leaking out in such a raw and overwhelming way that feelings become physical. It's intoxicating to say the least.

Ephedrine

omg I'm so strung out right now... totally wired. All these letters are blurry hahaha... wow, no amt of blinking brings them into focus

That it's me

My goodness... it's as though I was holding my breath this entire time. Is that what I'm doing? Just waiting without letting it be known, for something sooo simple, yet so powerful in it's effect on me?

I spend so much time and emotional energy not giving in and the instant that I do, it changes me. Like a guilty pleasure. I beat myself up constantly in the lead up but as soon as the decision is made, I realize that I keep doing this for me... and it somehow feels incomplete and I would never acknowledge to myself why... But it's because I keep waiting for it... for the little things that I felt so much and loved so dearly... the little things that mean everything.

Where has my heart gone? Trapped in the eyes of a stranger. oh I... I want to go back to go back to, believing in everything (and knowing nothing at all)

You're ok

I just caught myself feeling something. It was a sweet sigh of relief... hint of a smile. A smile that slowly fades if I think about what it means for me. But you're ok.

Day 3 - Sigh

I don't know how to even start this post. I'm tired. Today is the worst. Slept for about 1 hour and by 4am... the torture began. It's getting worst. I am so run down, so very run down that I almost fainted this morning... and I never faint! I'll prolly explain later how that went down. Right now I'm awake after a 1.5 hour knock out... fever and pain gone but my clavicle, neck, face and head is on fire. More hives breaking out. A heat that this a/c can't even touch. Maybe I should ice it. But I'm afraid to get up...

These entries are getting so personal. This is so weird for me.

I can feel my particles vibrating

I can feel my particles vibrating!

Yup folks, that's exactly what I said tonight.. High as hell and running on pure adrenaline but I could not have said it any better. You know in quantum studies it is said that we are not physical beings but on a subatomic level, each particle or 'matter' when broken down, is all essentially energy, vibrating at a certain frequency. This solid matter *scratches neck* is not really solid at all.

I sit there holding a spoon in my hand and watch it shake. I hold the phone to my ear and feel my arm wobble. I say 'gosh babe you must be so tired' and I feel my lips quiver. My heart races and everything flutters and quavers... I am so wired! I lie on bed and feel my entire body vibrate... like I'm lying down on a subwoffer that's emitting a low pitch hum... It's a hum indeed. My body is humming! I close my eyes and it's all whirling through me, pure energy! It's draining me and pumping me up at the same time. *scratches everywhere*

I can feel my particles vibrating. It's a rush! It's scary. It's calming.

It reminds me of the days I used to have dance performances. After an entire piece on stage, in the spot light, vigorous movements without any flaw or falter... the curtains will close and I would feel every inch of me shaking. Ultimate adrenaline rush and nervousness.*scratches clavicle left side*

This suddenly reminds me of a quote from the song 'Third Eye' by Tool

Today a young man on acid realized that all matter is merely energy condensed to a slow vibration. That we are all one consciousness experiencing itself subjectively. There is no such thing as death, life is only a dream, and we are the imagination of ourselves. Here's Tom with the weather

 Now if only I could stop itching...and stop scratching *scratches clavicle right side* Resisting the urge I must say, takes all the will power any one person can muster. I am really not exaggerating.

Day 2 - I need someone to hit me on the head

After my last post, I decided to chill on bed and watch a nice movie... something to take my mind off everything. Relax, distract and maybe get sleepy... Ghost of Girlfriends Past.

10:00am ... Just 2 hours after taking meds and lathering in calamine lotion... I discover it's spreading, getting worst... *sighs* I stood applying calamine to spot after spot after spot and eventually lost my count at around 50 :( ...

10:30am... I page my doctor, letting him know it's getting worst

11:15am... He calls me. First thing first, I gotta pop 20mgs of steroids and wait it out. Secondly, I need to find out if we are using any new detergent, soap, perfume... anything...

What can I be so allergic too?? Is it something that new that it's taken me my entire life to be exposed to it... or is it my immune system just totally out of whack from surgery etc... that I have randomly developed an allergy?

Oh... it's 1 month post op :) This morning I realized that both surgeries were exactly 9 months apart... Thursday November 26th 2009 and Thursday August 26th 2010... Same day, same date.

So back to the title... I need someone to hit me over the head, knock me out unconscious and then I wake up when the meds have worked..

Day 2 - I need Mittens

It's now Monday morning... I'm gonna give all I have to make this entry coherent.

I tried calling it a night by 2am. I recall being so drugged and so tired and so sleepy... but all I could do was toss and turn and roll from side to side (a blessing that is I must add) ... and mostly, all I could do was scratch!

5:00am... mom wakes me up asking if I need her to rub some calamine lotion on me. Guess all my scratching alerted her.

5:20am... I check myself. oh... em... gee... hives have spread. My entire back and legs :( ... I cannot begin to describe the torture of that kinda itching... especially when you cannot reach to scratch. Something odd to note, I am getting hives breaking out on the same spot more or less, on either side of my body... like a mirror image... mimic game... According to a friend 'your allergies have OCD'

And no sleep... I feel spazed, spaced, zoned & wired all at the same time.

My bro took a picture of me and had quite a laugh. I look like Fever Ray from her 'When I Grow Up' video. Calmine lotion all over my head and face and neck... etc etc etc. His words were "You look like you're gonna make a music video... or shave" haha

It's 8:00am... I am lying on bed trying to ignore the itching. Hoping the meds work soon and that I can possibly get a nap. I find myself shaking like a junkie in withdrawal, eyes wide open and vision distorted... I really need sleep... and relief... and you

Allergy

Idk, I'm thinking... maybe I should document this. Seeing as I'm breaking all the rules of silence and all...

So here goes:

Yesterday I was really idle, just cannot settle down... I decided to get out my head a bit and watch a movie instead. I saw Shutter Island on my External, 720p... nice! Popped in my new headphones and pressed play. Whoa! Sounding and looking SO good! I paused the movie after 2 minutes to go settle some stuff so I can watch it out w/o anything left undone... and that's when the 1st recognition of symptoms began.

My head was itchy! I didn't take it on... watched out the movie... 2hrs of a psychological thriller... good stuff! When it was done, I got up and felt sooooooooooo disoriented! Did I really just drown myself in the movie land so much? Ahh I was itchy! 'Maybe I'm miserable!' I think... I called up a friend, who confirmed that I just miserable as usual. I decided to take a shower, maybe that would cool me down, stop my head from feeling like it's on fire. This was 9pm

By 10:30pm... I am trying to watch tv (something I never ever do)... anything to distract me from dis itching. My entire head started feeling like I got attacked by a dozen good sized stones and just bumps and heat and redness remain :(

2:00am.... I realize I am in trouble... but I distract myself being miserable with another

3:00am... My day begins...without even my night ending. I have broken out in hives! I text a few doctor friends & try not to panic... just lay down and try to sleep... try...

7:00am... after trying hard to sleep but only itchy, and after taking some piriton etc... I get off the bed to the allergic reaction being worst! Whole body... especially from neck up :( ... my poor ears

7:10am... I page my doctor

7:25am.... He calls me. Speculation is that I am exhibiting symptoms of an allergic reaction to the actual drug that doctors prescribe for allergic reactions! haha the Irony... the irony...

8:30am.... Got and took new meds

All I want to do at this point is listen to Nine Inch Nails - Piggy 

1:00pm... Things are getting worst! I am drugged, itchy, covered in calamine lotion & nothing's doing... But least I'm not getting anaphylactic ... I can breathe, I can swollow... I should sleep

I sleep for about 2 hrs... nerves shot. Feeling shaky & absolutely drained

4:00pm... I wake up... the welts have finalllllllllyyy gone down a bit. Itchy still, head on fire, ears on fire.. but the welts are down!

5:00pm... I am still very drugged, my head lolling ... my hands shaking... my speech rambling

7:00pm... I look like I'm playing Jouvert... I acting like I'm a total druggy in this this jouvert band

8:00pm.... Zoned... trying not to scratch... praying it all goes away. Loving the love I've been getting & missing the love I'm not

Hey Pig... Hey pig piggy pig pig
Hey M0th3r fu(k!ng pig!

I'm aware... I am

I stumbled upon an old entry from March 2005... I kept reading this line over and over and it's puzzling that now five years later, I feel as though I can relate to this all over again. I doubt it's a repeat as much as it's my ability at being vague ;)

But here I am... stuck in a situational scenario which is a direct replica of all that I dreaded, feared, hated... a dispiriting and depressing conducer of all that I've suffered before... I fear admitting to this ominous feeling. I fear for my happiness - and that’s blasphemous. Fear of loosing it diminishes it all on it's own.

The original entry is here: Into Your Hands

Deep Inside of You

Something's gone, you withdraw
And I'm not strong like before
I was deep inside of you

I can go nowhere
I burn candles and stare
At a ghost deep inside of you

And some great need in me
Starts to bleed
I've lost myself, there's nothing left
It's all gone
Deep inside of you...

Don't speak

How can I reach out and hide at the same time?
I just realized that's exactly what I'm doing.

I was instructed and warned tonight to not tell people my business. Don't tell people how I feel. Especially don't tell people if I am unwell. Don't tell people anything. No wonder anytime life is like how it is right now, I tend to go into 'drop off the face of the earth' mode. An undeniable state of conditioning.

Sad thing is, I grew to actually learn the hard way the logic behind it... I burn to learn and since then it's been especially difficult.

In general, being direct is so hard. I always pick and chose what I say and what I don't. I always sound 'fine' on the phone and look 'good' when ppl see me.

I like people and I'm afraid of them.
The ones I like the most are the one's I'm most afraid of... at least for awhile. At least till the point that I realize I have nothing to lose again.

I'm grappling with too much conflict ... This is what I realized tonight. Pity it took a fall out session for me to do so. I'm torn between being terrified of expressing myself and being an innately expressive person who yearns to be understood... bleeds to feel....

On another note, I love hard

Beat

My heart beats
Hard

I am amazed that it keeps beating, beating, beating...
When everything else hurts
Hard