Know your limitations

 Two weeks ago I handed in my notice………. ( I work at a bank - in Nigeria)

It's taken me a while for me to get to this point but it's something I had to do. For most of us we usually have the following reasons why we move on from our jobs 

•    Lack of motivation or direction

•    Frustration

•    Career progression

•    That most sacred increase in pay

•    or simply put you just can’t stand your boss

I won't lie and say that these weren't some of the reasons why I decided to move on but the reason that tipped the scales was the conversation I had with my GP over the summer.  As I have mentioned in a previous post Finding that Balance, I had been struggling with the work, life, and Grinch balance.  That was over a year ago, and while I had successfully manoeuvred work, the Grinch was kicking my arse and fucking with my brain.  

Back to my sit-down with my GP.  I hadn’t met her before…… we’d moved house so we had changed our GP practice.  So it was an introductory conversation, so she looked at my blood work, asked her questions and looked at me dead in the eye and said

“Given your type of Sickle cell, you should not be having these many crisis”

“Really? Well I know I’ve been working hard lately and I’ve been able to figure out how to bounce back……..”

“Its not about bounce back, you shouldn’t be having this many episodes at all.  You may not feel the effects of it now but every time you have a crisis it affects your bone and internal organs……. many of which you might not see the effects till you are much older.  Maybe you should make some life changes?”

She did give me the a whole load of medical mumbo jumbo but at that point I had stopped listening.  I had started my own conversation inside my head…….

Its hard when you know you are at disadvantage amongst your peers.  Given my experience one of two things usually to happens.

1.    You over-compensate. 

2.    You simply give up and use your disadvantage as the perfect excuse.

“As a woman working in a male dominated field, you need to make sure you are on top of your game to remain relevant” 

“We are sending you abroad to school, and we’re working really hard to pay your school fees - remember you are African and that you can not fail!!”

“Yes you fall ill from time to time, but you can’t use that as an excuse - your mates will leave you behind”  

These are typical scenarios where people feel the need to compensate.  The fear of failure is usually the driving force for why we push against the odds.  For me the fear of failure is raw and real this applies to both work and relationships - we’ll keep that for another post. 

Now before going into my appointment, I knew that work was the main reason for my more frequent crisis but like I had said before I had figured out a really good system for bouncing back.  I knew it wasn’t a solution to the problem but I was duking it out at work with the best of them and only a precious few at work knew what I was putting myself through to keep my head above water.  “Survival of the fittest…… never let them see you weak”  

Here is the kicker - I wasn’t happy.  Over the years I have become an expert when it comes to burying my feelings, always approachable, laughing and smiling.  The reality is this…… if you are breaking your back to sustain one aspect of your life, the other parts will suffer.  I was tired all the time, partly because of the mental exhaustion of me constantly pushing and partly because I was on pain medication…… constantly.  Inevitably anyone who made demands of me at work got a whole load of resentment their way - not always communicated but definitely their way.  It was becoming toxic.  So when my GP told me to make a change I thought - ‘Yup, its a wrap’.

Everyone at some point in their lives has had to deal with having to quit at something.  Some see it as failure, while some see it as change.  I choose to see this as a means of change, my evolution - me adapting to survive.  I tried at my ‘old’ job was actually quite successful at it, and it still didn’t work out.  I didn’t give up, I simply let go and now I’m open to a whole load of possibilities.  Being just open is not enough, no you need to evolve - learn what works best for, learn your limitations - accept your limitations but don’t let them limit you. 

To be fair, this doesn't sole apply to sicklers.  It applies to anyone who faces some form of adversity in their lives.  One of my favourite poems by our dearly departed Maya Angelou does help to motivate and sustain me.

You may write me down in history

With your bitter, twisted lies,

You may tread me in the very dirt

But still, like dust, I’ll rise.

Does my sassiness upset you?

Why are you beset with gloom?

‘Cause I walk like I’ve got oil wells

Pumping in my living room.

Just like moons and like suns,

With the certainty of tides,

Just like hopes springing high,

Still I’ll rise.

Did you want to see me broken?

Bowed head and lowered eyes?

Shoulders falling down like teardrops.

Weakened by my soulful cries.

Does my haughtiness offend you?

Don’t you take it awful hard

‘Cause I laugh like I’ve got gold mines

Diggin’ in my own back yard.

You may shoot me with your words,

You may cut me with your eyes,

You may kill me with your hatefulness,

But still, like air, I’ll rise.

Does my sexiness upset you?

Does it come as a surprise

That I dance like I’ve got diamonds

At the meeting of my thighs?

Out of the huts of history’s shame

I rise

Up from a past that’s rooted in pain

I rise

I’m a black ocean, leaping and wide,

Welling and swelling I bear in the tide.

Leaving behind nights of terror and fear

I rise

Into a daybreak that’s wondrously clear

I rise

Bringing the gifts that my ancestors gave,

I am the dream and the hope of the slave.

I rise, I rise………

I rise.

Traveling with the Grinch

So for my vacation I find myself in good old Blighty - the United Kingdom - for my baby sister's wedding (I don't care how old she is, she will always be my baby sister). I love Blighty, I grew up here, became who I am here, she's my second home. Blighty is where I learnt to take care of myself - on my own without parental assistance (best believe financially they were holding me down). Here is where I learnt that possibilities are endless so long as you're willing to take that first step. Blighty is where I learnt that no one is responsible for your welfare - you are.

I've never been one to take risks. The Grinch is a perfect excuse. 

"Lets go on holiday to Ibiza" 

"Man, I can't afford it" - the reality was always - hmmmm what if I have a crisis?

And sometimes the excuses creep into other scenarios.

"I can't be an investment banker, that job is too stressful"

"I can't take that course, what if I fall ill because of the stress?"

"I can't work out, I'm sure I will get sick"

"I can't go out, its too cold"

A Sickler's world can feel like its full of obstacles, obstacles that prevent you from being spontaneous or adventurous.  Family (bless 'em) in a bid to protect you can also reinforce those obstacles.  The reality is this, an obstacle is only an obstacle if you let it.

In my second year of university, I caught a bad case of 'itchy pants' syndrome and decided I didn't want to spend my third year in the UK.  So I applied to go on an exchange program to the University of Madison Wisconsin....... it was just a 'lets apply and see what happens kinda thing'.  I got it, in addition to a nice tidy scholarship - there was NO WAY the Grinch could mind fuck me to letting go of this opportunity. 

So off I went to Wisconsin, the 'America's Dairyland' - home to the cheeseheads, the Green Bay Packers, Garbage (The Band..... luv 'em) and the Wisconsin Badgers.  I was chasing my dreams, doing me, and then one night it almost came crashing down...... Hold on to that thought we'll get back to that shortly. 

For those Sicklers that are looking to go to university in the 'abroad' see this post as your idiots guide to survival health-wise. For those coming from a hot country, brace yourself because your body is going to have to adjust to your new environment. The change in temperature and humidity can be a clusterfuck. 

1.  Stay warm and more importantly stay dry. For the black females out there, you know that mantra about keeping your hair dry? Use that for the whole of your body. 

2.  The weather forecast is your best friend.  Nothing worse than stepping out of your house dressed for the summer and its autumn outside. 

3.  Drink loads of water, u might think you're not losing water because you aren't sweating. Big mistake, you are losing just as much water from central heating and the dry climate. 

4.  Get registered with a GP. If you can, dependent on your insurance options, get to see a hematologist. Based on your first meet, both of you can determine the frequency of your appointments. 

5.  Take your Penicillin. I do not deny that I am the most non-compliant patient so this tip is a tad hypocritical of me. In Nigeria the most common trigger of a crisis apart from stress is from infection - Malaria. Same could be said for the 'abroad' except it's chest infections. 

6.  Get your annual flu jab. The flu is no joke. Imagine having the flu, and then have a bad crisis aggravated by said flu AT THE SAME TIME? Not fun.........

Back to my anecdote.  Madison, Wisconsin is located in north-central USA, a mere 4 hrs drive from Chicago, Illinois.  Its a pretty quiet town with everything going for it........ except its fucking cold in the winter!!! So you guessed it, I fell ill...... constantly.  One particular night, the pain was excruciating and I couldn't breathe.  I had a flash back of annoyance  I remembered I didn't protest enough when the boyfriend at the time informed me he was going to Atlantic City with his Frat Brothers. (for those of you in the know, you can only imagine where and what he and his brothers were up to). Long story short, I woke up in ICU three days later. I have no conscious perception of what happened within those days.  What I do know is that I had had an acute chest crisis, which had required a blood transfusion. My parents freaked out!!  My mother - who I call my personal stalker - had located me in hospital (all the way in the abroad) and I spent the next two days trying to dissuade her from jumping on a plane to Madison Wisconsin.  

At that point, I could have left the U.S. with plausible reason and abandon my course. For me that was not an option. The thing is this - for whatever reason I was born with this condition but there was no way in hell it was going to run my life. Don't get me wrong I did run back home to my family........ It was a sorry sight. I had lost over a quarter of my weight, two dress sizes, and I had to use a crutch (I'll save that for another post) but when summer school started (despite my mum's pleas) I was back on a plane to Madison to make up my credits. 

So what's the moral here? 

God never gives you anything you can't handle. If he did, you would be dead. So don't use your 'hang-ups' as an excuse not to follow your dreams. That would be a total waste. Don't settle and kick arse. Apart from my mishap I had a fabulous time, an unforgettable experience and a sense of drive which keeps me going even now. It was from my time in the U.S.  I realized that getting a PhD was not impossible. 

So take risks (within reason) and live your life to the fullest!!!  Take precautions - you never know when it will save your life and just live. You have the right too. You're here aren't you?

So with that I'm gonna go enjoy the rest of my vacation. 

Toddles!!! 

SEX............. and the Grinch

SEX!!!  *giggle*

Now that is an exercise that everyone (especially in this part of the world) likes to pretend they don't do........ well those that aren't married...... and they be humping like rabbits.  Hypocrisy aside its an interesting exercise and tied in with the grinch it has lead to some interesting and compromising situations - I'm sure you're all gagging for my funny stories, maybe later....... over some dinner and a glass of wine.

First off, I'm about to vent right now, there are certain entities I would like to sue.  The first would be Walt Disney.  Fine as a kid sex is not the first thing on your mind when you watch the little mermaid or the princess and the frog, but hell……. that concept of happily ever after did not prepare me for the reality of sex and love - well that is another interesting topic for another post.

The next one is Mills and Boons.  At no point do ANY of those books prepare you for the messiness that is sex.  All those bodily fluids, the heat....the sweat..... the noises.... is not the pretty picture those books make it out to be.  

Rant over back to the real topic at hand.  Religion and morals aside, sex is one of the rights of passage growing up as a young buck.  From the moment you enter your teens, you talk about it, fantasize about it and for most of us lie about our experiences with it.  There isn't a rule book that tells you what to do or how to go about it........ most of us just muddle through trying to achive that sacred orgasim.

For Sicklers all of this applies in addition to what I call the Russian Roulette syndrome, let me explain.  While sex is a powerful & enjoyable experience (just ask Henry VIII, dude started a new religion just so he could bone Anne Boleyn) its also quite strenuous and can cause a crisis.  The act in itself, if done too rigorously - I know, I know porn has a lot to answer for - can cause an attack during (this totally sucks balls - pardon the pun) and after (at least there is the pleasure before the pain).  So Sicklers have to 'prepare' for the act.....we'll get to this later but know that as with everything the Grinch - spontaneous little devil - can still make an appearance.

I can hear the young ones complaining already....... why does one need to prepare for sex?  This totally kills the spontaneity of the situation, why can't I be like normal people that just do it???!!  This is just another thing the Grinch uses to complicate my life.  I hear you, but you know what? Sex is a wonderful thing........suck it up and deal.  You not taking care of yourself does not only affect you.  Case in point was when I carelessly had sex with an individual who didn't know I was a sickler after a wild nite out clubbing.  EPIC FAIL!!  The night ended with an ambulance ride to A&E and the poor man running for the hills thinking that he had 'broken' me.

The other point is this...... if you are pursuing a serious relationship with someone and you have a crisis every time you have sex best believe, despite how good the other person is, it will put a strain on your relationship.  

So how do you - the Sickler - prepare for 'la petite mort'?  I did a quick scan on the internet and I was pleasantly surprised that in other parts of the world people do talk about it....... in depth.  The Sickle Cell Warriors site had an interesting article that stressed the following points;

1. Hydrate excessively.  Sex is a physical activity, and like all physical activities, you will perspire and lose bodily fluids. So drink water before, during, and after without shame.  Sure you might have to break to pee, but at least you won't be in pain after.
2. Premedicate. For some, taking painkillers before sex helped to stem the tide of a mini-crisis afterwards.
3. Talk to your partner.  Tell your partner that you might have some limitations around sex. Communication is essential and will help your partner be a vanguard of your safety. Tell him/her that you are excited about the boudoir session, but need to protect your health. 
4. Listen to your body.  You must remember that “Pain is your Body telling you that You Need to Take a Break.” So when you are having sex, if you feel pain, stop. Change positions frequently so that you don't lose blood flow in any areas. And remember, you don't have to be going hardcore every single minute. Sometimes, it’s the pauses between sex that elevate your intimacy.
5. Set the environment.  Your bedroom should not be too hot (you will sweat more and dehydrate faster), or too cold (you will vaso-constrict and sickle faster).  Choose a decent temperature, that is comfortable for nudity.  Men—remember that women have to be romanced in the mind first. Women—remember that men have to be seduced visually first.
6. Frolic with Foreplay.  For people with sickle cell, foreplay is your friend. Foreplay gets your partner hot and bothered, and yet, it doesn’t have you over exerting yourself.  Don't rush the foreplay—drag it out, take it slow, and leave your partner simmering and almost about to explode.
7. Be Safe.  Safety is key. Have fun, play hard, play safe, use condoms/birth control.  Make sure if you do plan to procreate, that your partner has been screened for SC trait. Better safe than sorry.

I hope this post has helped but I wonder if any of you have any tricks that you have found to help?  Don't hesitate to leave your comments and for those that are more sensitive my email is foxycleo@gmail.com.

Toodles!!!!

To my friend...........Edmund Oteh

It was a just a normal day at work. It was raining outside and EVERYONE was complaining about how cold it was in the office.  I mean really – it’s cold outside so why do we need to have the central cooling system on full blast. Me? I was totally fine. Not only did I always have my trusty cardigan I also had my blanket.  Yes you read right, my blanket.  My wonderful mum, based on my previous complaints had taken it upon herself to purchase a 100% lamb wool blanket from the abroad to protect her daughter from the cold.

Anyone who knows me knows I have no shame.  In my corporate environment you will see me with my trust blanket wrapped around me like a ‘wrapper’ as and when needed.  J 

Then I got the phone call… it was from O.

O: Hello?

Me: How nawh? How’s u?

O ignores my question and goes… Are you sitting down?

Now O and I have a history to taking the piss out of each other on the regular, so I reply ‘Yes’ – I was lying.

O: He’s gone your son has gone….

Me: Huh?

At this point I was confused for two reasons:

1. I was waiting for the punch line, O never started a phone conversation in such a serious tone and
2. Given that I have never been preggers I was wondering where the hell I got a son from

O: Eddy he’s gone….

As the penny dropped I wish I hadn’t lied because my legs gave way and I fell into my chair. 

Me: What the hell happened?!

O: He had a very bad crisis… I have to go, will call u back

Trust O to drop a bombshell and leave!!

My emotions flew from confused, to sad, to that of white-hot anger!!  I’ll explain why.  Eddy was a colleague from my last job.  Eddy was a Sickler.  He was a quirky, intelligent, funny, larger than life character who was drifting through life.  Dude had potential that would take him far, but due to his condition (and social constraints) he did take the easy route with a lot of things.

We became fast friends and yes I did end up ‘Mummying’ the lad.  We could relate on things that so many non-Sicklers can only fathom.  I always knew when he was ill and pretending (EVERY Sickler has done this).   With him he usually did it for 2 reasons:

1. He didn’t want to go home (the commute did take it out of him cos he lived in the sticks)
2. He had forgotten his painkillers

I can’t count the number of times I would give him pain meds (being a female who caries a handbag helps a sister be prepared).  I also found myself acting like my mum, checking to see if he had had drunk enough water.

I would always ensure that he was empowered at work, and he was happier for it, taking on more responsibility and making changes in his life.  I remember having a heart to heart with him where I told him that his mum (bless her) would not be there to take care of him forever.

Eddy died on the 2^nd of April 2014 from complications from a badly managed crisis.  I won’t go into the details but I will say this… it was totally unnecessary!!  Today, the 19^th of June 2014 is Global Sickle Cell Awareness day.  If you have read my previous post you will know that I feel that there is too much emphasis on prevention and not enough attention on living with the disease.

Awareness should also extend to Sicklers.  Sicklers are experts in their condition – every Sickler is different and every crisis is different.  While Doctors are trained in the medical field, their jobs are easier when you the Sickler can put in your own input.  Know your pain levels, take care of yourself and NEVER be afraid to question their treatment.  The moment a doctor doesn’t listen to you, insist on getting another physician. 

It’s taken me almost 3 months to summon up the courage to write this post because;

1. I knew I would have to write about Eddy in the past tense,
2. Writing about this will also make me think about the reality of my own mortality and how I would hate to pass away due to Sickle cell

On that sobering note, I’m out.....

Toodles!!

Hello my name is [insert name], would you like to be my friend?

This post is going to serve a guide (I'm struggling really hard to not write idiot's guide) to being a friend to a sickler.

Why do you need a guide?  You don't really but sometimes its nice to have some clarity on how to handle certain situations and reduce the number of douchebag moments.

I don't look like a Sickler. What does that mean? People assume that because one is a Sickler one must look sick......all the damned time!!  In the book that traumatized me - for a refresher read this, it indicated that Sicklers had the following physical characteristics

1.  Yellow skin and yellow eyes

2.  Buck teeth

3.  Predominate foreheads

4.  Inflamed joints. The list was endless. 

I like many others don't have these physical characteristics, so friends & family tend to forget.

Its a double edge sword.  While Sicklers don't want to be reminded of what they are, they need for their friends & family to remember.  Why?  Because in a bid to be 'normal' some Sicklers take risks to be in-with-the-crowd.  Everyone goes through this........ its part of growing up.  The only difference is for Sicklers or anyone with a pre-existing condition the repercussions tend to be predictable and more severe.  In my previous posts I've talked about the short term effects of sickle cell pain.  There are long term implications each time a Sickler has a crisis, one of which is Bone Sclerosis.

Bone Sclerosis otherwise known as the bruising of the bone.  Research has shown that there is a positive correlation between bone sclerosis and crisis episodes. In essence, just because you don't see anything on the outside, believe that there is some damage going on on the inside.  Side effects of bone sclerosis can range from the 'bowing' of the vertebrae and the slow corrosion of the head of the Femur. When you are a young spritely young buck you don't think of these things. When you get older...... TRUST the fear of growing shorter or getting your hips replaced is no joke!

Back to friends & family.  In my experience one of two situations can occur;

1. Friends/family tend to wrap Sicklers in cotton wool. While this comes from a good place it does get fucking annoying!
2. Friends/family forget and push Sicklers (unwittingly) into compromising situations.

I am the first to admit that in the latter situation the Sickler should take on the responsibility of just saying no, but it does get wary when one has to say NO all the time. And this leads perfectly into where being a young, stupid whippersnapper comes into play:

So what is a Sicklers Kryptonite? The concept of being 'normal' - to have cold showers, drink only when thirsty, get cheap travel insurance, run on a treadmill for more than 20 mins, survive on less than 6 hours sleep, drink their fellow drinking buddies under the table, step outside in the cold without a sweater/coat, go 6 months without having to see a hematologist, ophthalmologist or an orthopedic doctor.....  The worse thing you could do to a Sickler is to make them feel like they are not normal...... but the reality is they aren't.

Over the years I have perfected the art of my 'play by ear' system when it comes to social commitments, much to the annoyance of friends and family.  The reality is no two days are the same, one day I could wake up full of energy, and in a split second a crisis could start.  So I cancel on my friends last minute and am hesitant to commit, this usually leads to frustrating conversations where I come off as a mean-spirited stubborn cow.  Those conversations irritate the fuck out of me.  The easiest thing for me to do would be for me to state the reason why I can't come out is because of the Grinch.......... but that would mean that I'm not normal.  So as a family/friend, if I say, I can't come out....... accept and respect it.

So what do you do when you happen to be with a Sickler during a Crisis?

Its funny..... I don't like having friends and family around me when I'm in 'full flow'.  Why?  Apart from it not being a fun time, I find myself comforting and re-assuring my friends/family.  It is exhausting.  I have been know to 'disappear' - what do I mean? There was a incident where I was staying over at a friend's house in Stratford.  The Grinch decided to make a house call and rather than alert my friends, I snuck out of the house, and drove.....in pain to Lewisham hospital. That is roughly a 10 mile drive.  Needless to say, my friend and her now husband were very upset with me.

So what do you do?  Just be supportive.  We've (Sicklers) have a lifetime's experience with this.  So don't panic, be strong, and LISTEN.  Tosin Coker states this eloquently, so have a gander.................

Toodles!!

Give me my damned meds!

One of the many side effects of sickle cell is opioid tolerance. This basically means that over time and use, the body builds up a tolerance to opiates used for pain control.

Gone are my younger days when a dose of less than 5 milligrams of Morphine got me over the initial crisis attack.  Now I have the pleasure of 10mg of Morphine every 4 hours (in the UK A&E, 3 doses and you're admitted.......locked in against your will).

In Nigeria, the drug combination strategy is preferred.  This usually involves Morphine and........wait for it..... 100mg worth of Diclofenac Sodium Suppositories!!  It’s a surreal experience when you actually look forward to a nurse shoving her finger up you arsehole.

I've never understood drug addicts. Taking opiates for a casual high seems like such a waste. I mean from the lethargy, to the hallucinations, the constant itching, and the constipation, why on earth would you sign up for that?  

Anyways I digress.  Opioid tolerance is the main reason why I ABSOLUTELY HATE hospitals.  There are other reasons but we'll get to them later.........

Pain is a sensation that the human body puts out because there is something wrong, that usually comes with a visual i.e. you break your leg - you feel the pain and you see a mangled leg.  The clusterfuckery of Sickle Cell is that there are no visuals.  The other issue with the pain is that it doesn't freaking stay in one place!  It would start in your left leg and then an hour later its moved up to your back.

As a casual bystander, take that visual - or lack thereof - switch and visualise yourself as the doctor administering narcotics.   Now add to the scenario the fact that you have already administered the max dosage and your patient is still screaming stating that the pain has moved to another body part.  Shady innit?

This is the scenario I am faced with EVERY time I have to go to a hospital without sickle cell protocols, and overly suspicious doctors. 

Which leads me to another reason why I hate hospitals.......... Shear bloody ignorance.

While I understand that the medical professionals have to deal with actual addicts looking for their next fix, it is - pardon the pun - a pain.

The phrase "But you look really healthy" is one of the most infuriating statements one can hear while they are doubled up in pain begging for pain relief.

Because of these perceptions I made some stupid decisions as a young buck. First, I'd wait at least 6 hours before I would call an ambulance to take me to hospital. Second, I would allow a doctor to ration my meds on the argument that they don't want me to become an addict. Both actions made me miserable because I'd be out of commission for more than a week, with another week to get 'back to normal'. 

This was my mode of operation until a sickle cell specialist nurse broke it down to me. Simple fact - the longer a sickler is in pain, the longer the recovery time.  Remember those muscles tensed up because of the pain? The longer those muscles are tense, the longer it will take for you to recover post-crisis. So while a doctor is pontificating on whether a sickler in pain is a drug addict looking for their next fix, their recovery time is being extended. 

At that point I became empowered. I started to ask questions about my treatment.  So for those of you out there still trying to figure out you own protocol, here is mine

1.    Identify what kind of crisis you're dealing with;

o   The Creeper: these ones you can manage at the start, but when they start to crescendo with pain meds......... go to the hospital

o   The Woosh: these ones catch you off-guard in the MOST awkward of situations.... don't worry we shall talk about that later.  They come fast and hard (yes that does sound dodgy) and they can literally take your breath away. Immediately you identify a Woosh, do not stop at Go, take a pill or try to manage that mutherfucker  - make a beeline to the hospital.

2.   Pain Meds: Demand them IMMEDIATELY.  You are allowed to bargain with your doctor regarding dosage.  This is however dependent on your relationship with your doctor.  I would recommend that you see your Consultant Haematologist at least once every 6 months even when you aren't ill.  Where there are records of your self-management there is less suspicion of you being a junkie.

3.   Fluids: get ready Wizz like a Mofo.  During a crisis your vessels are literally clogged up with ill-fitting blood cells.  The fluids help flush out the clog and keeps the blood moving. Failing that you run the real risk of having a stroke.  Fluid delivery can happen one of two ways;

1.   By Mouth: this is my preferred option, however dependent on the pain it can be a tug-of-war with the nurses on the efficiency of this method

2.   By Drip: the doctor's preference.  Its more efficient and they can infuse antibiotics, and other medication without having to stab the patient further. Reason why I hate it? You need to get stuck in the vein with a needle. 

Hypodermic needles are colour coded by size:

·      Brown – Big Man dem type veins

·      Green – Normal size veins

·      Pink – Little girlie type veins

·      Blue – Baby type veins 

Inexperienced doctors will turn you into a pincushion.  I warn doctors coming near me to only use the blue needles and because after 33 years of sickle cell experience I have the veins of a junkie.  So know your needle size and let the doctors know!!!

4.    Oxygen: Get that mask on and be prepared to Breathe In, Breathe Out.  Why?  Your body at the time of crisis is starved of oxygen.  As I stated before, pain is a sign that there is something wrong – so more oxygen, less pain.  Ironically, the lack of oxygen can also trigger a crisis so it’s always good to do some breathing exercises when feeling low.

So the next time you have to go to the hospital (I hope it’ll be not in the too near future, but don't be fooled – it will happen) be equip and take control.   Be demanding, ask questions and let the doctors know that while you are a patient, you are also an expert in your field – YOU.

Toodles!

Sickle Cell Awareness Day

Today (June 19th) is World Sickle Cell Awareness day created by the United Nations.......... It's days like today that make me wonder about my very existence.

There is a lot of energy being put into the awareness of sickle cell, it's prevention and its possible cure, but sadly the same effort hasn't been put into trying to understand how people live with the condition. 

The concept of prevention scares me. I know it's coming from a selfish place, but let me explain. Due to my mother's rare genotype, when my parents got married they couldn't identify she carried the Beta thalassemia trait. So my parents sired me without knowing I was a sickler....... So the question is, if they had of known would I exist? 

Today in Nigeria, many churches have taken up the role of not sanctioning marriages between a couple who both have the sickle cell trait. I find this very disturbing!  

The decision of marriage should be between the two people to want to go on that journey. Sickle cell awareness should help the couple make a well informed decision about their journey but it should not define whether they take the challenge or not. 

Don't get me wrong, it's not an ideal situation, but hell there is a 3 in 4 chance of them having a non-sickler. In addition due to advances in medicine it is possible to test early enough in the pregnancy to find out whether the child has sickle or not.  There are options for those individuals that decide to take up the chance of having a sickler, but that is for another post.

Being a sickler does suck balls but dammit I exist, and I am fully functional. I have achieved a lot in my life and I'm sure my parents are proud of me and are happy they had me. 

Sickle cell awareness should also be about celebrating our Sickle Cell Warriors. The ones that come out swinging, despite the odds.  So today, spread the word about Sickle Cell, research it, understand it, and by all means HUG A SICKLER, they'll appreciate it.

Toddles!!

Found this video of another sickler, Prodigy from Mobb Deep (his status was made famous by 2Pac)

What's it like being a Sickler?

The first time someone asked me that question I shot back a typical Foxy reply "What's it like being normal?"

I still get irritated when people make the mistake of asking that question. I mean, this has been my existence from the day one.  So how exactly do you want me to quantify it for you?  What do you want me to compare it to?

What does sickle cell pain feel like?

It’s a question that most people ask and it’s not an easy question to answer.  Pain is a sensation that everyone experiences to varying degrees but its not something that one can define.  Here is the thing; unless you have sickle cell you will NEVER truly understand what the pain feels like.

Why do I say this?  There is a clear distinction between 'regular' pain and sickle pain.  Regular pain is a fucking breeze compared to sickle pain, let me give you an example......... Black women addicted to the creamy crack (hair relaxer) I'm sure you can relate.

At 18, my pain threshold had gotten so high that whenever I relaxed my hair I couldn't tell when my scalp was burning. Needless to say, the last time I relaxed my hair I was left with scabs that covered over 60% of my scalp.  That was the start of my natural hair journey........ yes I shall blog about this too.

I realise that this might not be enough of a description for some skeptics out there so I did some research to see if there were any Sicklers who could do a better job, see video below.

So what happens when you have a crisis?

There are 4 types of crisis
1. Aplastic crisis
2. Haemolytic crisis
3. Splenic sequestration crisis
4. Vaso-occlusive crisis
I won't go into the definitions but I have the great fortune of only experiencing vaso-occlusive crisis.  A vaso-occlusive crisis is caused when the sickle-shaped red blood cells obstruct capillaries and restrict blood flow to organs. 

So my answer is simple........ unadulterated pain.

These 'sessions' can vary - from the ickle ones you can manage on your own, to the mutherfuckers that land you in hospital.  I still can't decide which one I prefer.....   

The ickle ones tend to last from days to weeks.  You can still function, but the pain is in the background.  This can be frustrating, as you don't know whether its going to get better or worse.  It also feels like it takes twice as much effort to get everyday stuff done. 

The mutherfuckers tend to be shorter (if there is no underlying infection), but the aftermath can be a bitch to deal with.  Let me explain....... 

The body's reaction to pain is to tense up the muscles around the area of pain.  The longer your muscles are tensed, the more those muscles work.  During a crisis you're too busy with the sickle pain to notice.  When its done, your body can feel like you've been hit by a bus....... been backed up on and hit all over again for good measure. 

The side effects of the pain medication are also something to consider.  They can make you

1. Drowsy - this side effect I love because it forces you to take the time out.  You have no choice.  The body in its drugged state shuts down to heal.
2. Constipated - same way the drugs slow you down, its slows down your digestive system.  The longer you're on those meds, the longer it takes for your digestive system to bounce back.  In some cases I've had to explore the laxative route to unblock the 'blockage'.  Picture that scene in Trainspotting where post heroin high, Renton (Ewan McGregor) uses a laxative suppository to sort out his constipation........ No more words need to be said on that score.

The final thing I will say is that there is absolutely no dignity in pain.  There is no posing......AT ALL (insert bush Naija accent here).  Take a woman who is in labour or a man who has been kicked in the nuts.  The last thing on your mind when you're in that much pain is how good you look, how badly behaved you are, other people's feelings, or how cute the doctor who's shooting you up with Morphine is.  You let go completely, this tumblr post sums it up beautifully.  

This has given me a 'I don't give a fuck' attitude on a lot of things, and I think I'm better for it.  I don't care what people think of me, or how I look to people.  I have been known to turn up at my friends house in my pjs, bedroom slippers equip with hot water bottle - who is named Babe.  It has contributed to the uniqueness that is me :) .

Toodles!!

In my search for videos, I came across lil Zechariah's video.  Maybe because its too close to home I couldn't bring myself to embed it on this post but I still think it is important to share his experience with you.