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