You are not alone

About a week ago I went on a short trip (Thank God) to IceBox country - my description of Winter, doesn’t matter where it is but if the temperature is lower than my age in ^oF we will have problems.  Couldn’t get out of the trip, believe me I tried but it had to be done.  Even though I lived in IceBox country for over 20 years, since moving to Warm Country - hee hee see what I did there - there are somethings I don’t miss.  Case in point, the constant pain - for those that read my blog - the Creeper kind.  So I was in a funk - frustrated, annoyed at my body and a little depressed.  So I posted this on Instagram as a pick-me-up.

To my surprise (sometimes you do forget that people do see what you put up on social media) I received this email.

..salutations Toyin (yes that is my Christian name),

I write from those terribly weird backstreets of the web where kinship is feigned behind anonymous computer screens via silly pseudonyms...<~ swear down I do not know what TF I just blabbered. Trying to sound smart when corresponding with smart types always gets me in a serious twist...sow

'erm I'll try again.. Hello Toyin, my name's MrAnonymous (not terribly important) but I am a closet sufferer who gets amazing support from the musings on your blogs, insta et.al <~ this is even sounding worse...mans coming off like a stalker n'dat. 

....<deep breath> Greetings Toyin, my name's MrAnonymous and I am big fan of your blog and hate to hear you are poorly. I have read your blog through really shitty times and it has always been really helpful. Sadly, my poor level of articulation and the void where grown-up vocabulary should reside in my brain have formed such a bond...nought but crap spews out of my mind's gob when I try to write. Thusly (not a word), I can not offer you a smart blog post as a trade for all the times you have unwittingly seen me through my dark moments..... <~ barf, I wear my trousers too low to come across so bladdy sof'

Arrrrrrrgh!...(last go)...Hello Toyin, I also tread these zany streets with a proper shite circulatory system. You have been pivotal in helping me come to terms with a lot..and truss mi, I am a grown 34 year old man. Sometimes read when you are poorly and just say a little prayer in me head...deciding to brave it today to actually let you know you've got a few knuckle-heads like us outchea actually wishing you better. <~sob stories irk me and I doubt you aren't fanatical of them either

(I give up) Toyin, desperately hope you do get better soon :)

This was a sharp reminder that other people do care.  Its easy to go to those dark places where you feel that no one else understands and that you are the only one in the universe who understands you.  Now in no means am I taking for granted friends and family that are there to see you through the dark times, but sometimes it takes someone you don't know to make you realise that you aren't the only one.  The world is not that cruel.

There are times when one can feel that God has a funky sense of humor and he that doesn't care, but its simply not the truth.  He NEVER gives you anything you can't handle, if he did then you would be dead.  So even when times are tough there is always someone who will be there to help you carry that load.  From a personal viewpoint I've found that no matter how much you push people away - and I won't lie I have been know to do that - much to the irritation of certain loved ones, yes you know I'm talking to you - someone will always be there to lift you out of that funk.......... if you let them.

So Thank You MrAnonymous for your email and giving me permission to post your email - obviously I have hidden his identity.

P.S. if you have been inspired to contribute to this blog regarding Sickle Cell - its effect on you, or your friends and family.  Please send your entries to foxycleo@gmail.com.  You never know who your words could inspire or help.


And on that note...... Toodles!!   

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!!!!

My relationship with pain

Pain is an interesting sensation. Pain can bring out a number of reactions; Shock, Fear, Frustration, Pleasure, Anger......    Whatever the reaction, they are instant and intense.

Over the centuries, pain has been used as a training tool. From a slave master whipping their slaves, to a toddler who sticks their finger in the hot water tap of a water dispenser, to a parent who smacks their child, to a person's first heart break.  The age old logic is 'if it hurts, learn from it and don't do it again'. 

So what's my relationship with pain? It's like any relationship you have with a wild animal. You can tame it, or in my case it tames you, but drop your guard or not play by the rules, it will cause all manner of damage. 

Pain is a wonderful training tool. I've been trained to get things done and avoid procrastination (sometimes though it is hard to do.....go figure, I'm human!). I've learned to be determined, work through the pain...... Take no prisoners. I'm fiercely logical, so my problem solving skills are off the chain.  All these acquired skills...... Sometimes it's hard to decipher  whether they have been taught to me or they are part of my personality. 

All these skills helped me get where I am today. I have a PhD........ In computer systems engineering (I won't lie, that shit was difficult). The thing about a doctorate is this, it has fuck all to do with how 'intelligent' you are. It's all about whether you have the balls to start and better yet, whether you can achieve the goals you set. It's not for everyone and to be frank if I was given a chance to do it again I not sure I would do it again.

Growing up I went to a catholic summer school (call it a symptom of very easy-going parents, cos we ain't catholic).  When the proprietor found out I was a sickler, she took me aside and counselled me on how the pain could be put as an offering to Jesus, because he did the same when he died for our sins.  I think she thought it would be an avenue to help me deal.  Here's the thing about drawing on metaphors, if you don't make them exact you run the risk of making yourself sound like you're selling pointless insurance especially when you haven't a clue who you're trying to sell it to.  When you think about pain, you think about the light at the end of the tunnel, when you get to the other side, when it stops hurting...... that does not happen with Sickle Cell.  Sure the pain stops after a crisis, but there is no telling when the Grinch will come back.  No one tells you how to deal with that uncertainty, no one tells you sometimes no matter how much you play by the rules "shit just happens".  But hey "That's life".........DEAL.

I know I'm not painting a pretty picture, and frankly my intent is not to, but these are the thoughts that can go through a Sicklers head from time to time.  I would have loads of sessions with my psychologist friend (I miss her loads!!) where I would just off load and she would help me see that even if I couldn't see the end of the tunnel there were those things that offset the bad - Family, Friends, Love, my achievements despite my shortcomings, and the hope that as I moved through the different phases in my life - MY Definition would have less and less of the Grinch forefront.

For my learned friends I'm sure they are chomping at the bit to say these thoughts and feelings are that dreaded word........... Depression.  Now most sicklers I know like to think that they only have to deal with the sickle cell - I'm one of those people but there are side effects to the disease that do affect our quality of life.  A year ago my GP in the UK made me fill a questionnaire and she told me that I was moderately depressed.   I totally ignored her but given these last couple of months I'm now inclined to take her a little more seriously.  I'm currently trying doing my research and I will have a post talking about Sickle Cell and Depression but in the meantime know that you (my fellow sicklers) are not going crazy and you are not alone...........

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)

I won't lie I'm impressed by the force that is T-Boz Watkins

There are not a lot of people in this world that I can honestly say I truly admire and respect. T-Boz Watkins is one of those people.  Looking at what she has been able to achieve despite the odds is an outstanding achievement.  I was trawling the internet for inspiration and I found a couple of videos, this one I broke it down.

I was privileged growing up in Nigeria.  I have two parents that are medical so I rarely went into hospital (and I HATE hospitals, but lets leave that for a later post).  My bedroom can still be converted to a hospital room at a moments notice.  The price you pay for being privileged - you are sheltered from the realities that lie in store for you.  

Yes I knew I have a chronic illness but I didn't realise how it will affect MY future.  As a teenager, I didn't think about how that would affect my career, future partner, if I was going to have kids, quality of life and life expectancy.  

Reality hit during a biology lesson at secondary school.  We were studying the Blood types and genotypes.  Obviously the topic of Sickle Cell came up and that was when my sheltered existence came crashing down around me.  Knowing my status, my teacher gave me one of those old text books used to educate newly weds on the perils of Sickle Cell.  *side-bar, this same teacher made me go to the staff room where she proceeded to pray for my healing - needless to say it was one of the many instances that influence my mistrust of religion*

It was a depressing read.

1. Life expectancy 30 - 40 years (and that was a good thing)
2. Strokes
3. Swollen joints
4. Kidney failure
5. Loss of eye sight
6. Necrosis of the hip and other major joints
7. Leg ulcers
8. Bone Infections

The list seemed endless.  Was this what I had to look forward to?  In a lot of ways the answer is yes...... but the one thing I have learnt in this life is this; how you deal with shitty situations defines you as a person.

Enter TLC.  

CrazySexyCool was the first album that I really connected to, and then I found out T-Boz was a Sickler and it blew me away!!  

In my world I was always told to 'take it easy', 'you aren't the same as everyone else' and then there was T-Boz who was dancing, singing and pursing her own dreams!  My world involved me hiding my status (again this is worthy of its own post) and there was this individual who was shouting it from the rooftops!!! 

It wasn't a solution to the problem, and trust me I still had a lot of growing up to do (still do), but it gave me the determination to NEVER let my condition get the better of me.  Now I won't lie there are times when it does get you down and you do have those 'why me' moments.  The key is to brush it off, remember your goals and move the fuck on!  Life won't wait for you.

T-Boz Watkins showed me that.  T-Boz I would like to Thank You from the bottom of my heart for you just being you.

Allow me to introduce myself.......

My name DrFoxyCleo and I am a Sickler.  Yeah I said it. I have Sickle Cell Anaemia and I am not afraid to own the fact that I am one.

In a lot of ways was born different, a cosmic joke, a rare breed within my flock.  Let me give you a little back ground......

There are three types of Sickle Cell;

1. HbSS  (this one I like to call 'The Full-Blown Showdown')
2. HbSC  (I call this the 'Just Kicking it')
3. And my personal favourite HbSBthal (The Clusterfuck)

Now I'm sure you can figure which category I fit into....... yup I'm HbSBthal.  Why would I call it the clusterfuck?  Let me explain......

I was born in Nigeria in the 80's to two wonderful parents.  My father was completing his NYSC serving as a medical doctor and my mum was a nurse.  Both my parents are Nigerian and oh did I mention that I am a twin?  Anyways 3 months in, I'm crying all the time for no apparent reason.  

My mother was at her wits end.  She had taken me to hospitals where I was probed and prodded but to with no answers.  My dad at this point had moved to the UK to continue his training, so the logical next step was to continue looking for answers over there.

We discovered that my mum carries the HbBthal trait gene and my dad is your typical HbS.     So why was it not caught earlier?

Clusterfuck 1 - No Federal, State, or Local government hospital actually tests for Beta Thalassemia in Nigeria.  Now this would have been understandable in the 80's but it is still the case now.  

I had the pleasure of trying to prove my Sickle Cell Status to the kind people at NYSC.  Their rules stated that I would need a blood test confirming my status from a government hospital.  Didn't happen, had to get a note from a Gov Dr stating that my type of SCD was 'Rare' and that a private test sent to South Africa will confirm.

When my parents got married, they took the usual tests.  At the time, they couldn't identify what my mother was so they just told her she was HbAA and my dad was HbAS.  This curveball lead to lil old me!!!

Clusterfuck 2 - Where is my twin sister in all of this?  She is HbAA.  My younger sibling is also HbAA........ yes in the name of the Highlander.......there can be only ONE.

So yes people!  There are 3 types of Sickle Cell that exist in Nigeria.  I may be a minority but dammit I exist!!

I've given you my Sickle Cell background but that is not all I am.  I am an eccentric, larger than life, outspoken, confused, strong black woman.  

Nice to meet you.