Bitch don't kill my vibe...........

Happy New Years folks!!!!

Sorry I've been able to post in a minute, what with the job change and the fact that my body for some reason is really resistant to change :D but we'll save that conversation for another time.

I wanted to start the New Year with something light-spirited and inspirational like New Years resolutions and plans for 2015 but I just read something that pissed me right off!!!!

Let me put some context to this upcoming rant...........

One of the reasons why I started this blog was because I felt that there is more than enough awareness on prevention and not enough awareness to those who live with the disease.

PREVENTION - it seems to be the buzzword in the media on sickle cell.  Now don't get me wrong there is nothing wrong in spreading the word but in Nigeria there is a nasty undercurrent to the prevention train.  Case in point, the article that inspired this rant: Before sickle cell sickens you in a cell... Now apart from the fact that this is a poorly written article one section in particular had me seeing red.

KNOW YOUR GENE BEFORE MARRIAGE
The days of ignorance as a re­sult of little medical research and public awareness are over. Soci­ety holds everyone responsible to guard against uninformed rela­tionships leading to marriage or child bearing outside wedlock.

While delivering a lecture on SCD – ‘Know Your Gene Before Marriage’ in Lagos recently, Dr. Martins Irhoeze told the work­shop that with medical research and public awareness embarked upon by the health ministry and religious bodies, there is no ex­cuse for anyone to fall victim to the disease or procreate children with sickle cell anaemia.

Just as the antidote to HIV-AIDS is abstinence, the fool-proof cure for SCD is complete preven­tion; and, like HIV-AIDS, it is easy to avoid the SCD because all a sensible adult needs to do is not to attempt to ‘acquire’ the virus that causes AIDS; acquiring is a deci­sion and that is where individual responsibility comes in.

“Similarly, a sensible adult go­ing into a relationship can easily avoid the problem of SCD by en­suring the genotype of his or her partner before marriage is con­templated.”

SKREECHHHHH Now I know this bitch DID NOT just compare prevention of SCD to the prevention of getting infected with HIV-AIDS!!!!!  Really?

Martins praised some religious organizations that created mari­tal counseling departments where intending couples are made to present their genotype test re­sults; some even go the extra mile to oversee the test themselves before the intending couples are counselled on other areas prepa­ratory for marriage.

I've always thought that Church's getting involved in the testing was a tad bit invasive but there are merits to this exercise.........

“The foundation of marriage today must be based on a thor­ough knowledge of what sickle cell disease is as well as the ne­cessity to know and ensure your genotype compatibility with your partner. The distinction between AA, AS and SS must be clearly un­derstood by both partners before marriage is embarked upon.”

Breathe Foxy Breathe because the clincher is coming..........

Martins painted graphic pic­tures of the consequences of ig­noring the genotype pre-marriage test. “People with incompatible genotype combination should not get married and those who are al­ready in relationships, must call off such relationships.”

I would love to hear verbatim what these graphic pictures are but in the meantime, who on earth made you judge and jury?!!! #*$*#*$*£

I'm all for awareness of how to prevent the disease, but I guess my irritation comes from the forceful tone of 'People with incompatible genotype combination should not get married and those who are al­ready in relationships, must call off such relationships'.  Awareness should not be about fear mongering, it should be about education, enlightenment and trusting that individuals come up with the answer that works for them.  Relationships are hard enough without bringing more fear into the mix!!

So I searched the internet to see if there were any sites that discussed SCD prevention in the right way and I found this Ask Dr. Craig!: Sickle Cell Disorder.  I took the liberty of taking some snippets of the article.  If you wish to see all the information please click on the hyperlink.

Get married and have no children
A good number of people, especially in the western world are choosing to get married and not have any children. Whereas in Africa children are seen as a completion to the marriage and are essential for keeping the family name alive, couples in Europe, Asia and the Americas are increasingly comfortable with limiting the scope of their marriage to the companionship that being together brings.

Get married and adopt
Some people choose to adopt children instead of having any of their own. Adoption is commoner in the west, and in some places like Hollywood has actually become a fad, with stars like Brangelina having adopted many children from all over the world. Adoption services are possible in Nigeria through the many orphanages here.

Get married and throw the dice
The odds of having a healthy child without any intervention are seemingly good. Three out of four. This means that there is a 75% chance that every given pregnancy could be either AA or AS. The other 25% is the likelihood of the baby being born SS. For some people these odds are good enough and they go ahead to marry and have children in the hope that the odds would be in their favour.

It is important to make clear again at this point that there will be couples who take this route and are fortunate enough to have all their children healthy (AA or AS), or have a mixture of AA, AS and SS. However, there are also couples who unfortunately go ahead to have all their children born with the disease.

Prenatal diagnosis
Some people don't like leaving things to chance and may feel that the 25% chance of things going wrong is too much of a gamble for them. In prenatal diagnosis, the couple throw the dice but are able to know before the baby is born what its genotype will be.

Doctors are able to take some samples from your baby while still in its mother’s womb (at this stage it is called a foetus) and determine what the genotype is. There are two ways of doing this; Amniocentesis and Chorionic Villus Sampling.

Pre implantation Genetic Diagnosis (PGD)
The aim of PGD is to ensure that couples have the best chance of having healthy children of their own. To do this the doctors will collect a number of the wife’s eggs (around 6-10) and fertilize them in the lab with her husband’s sperm (just like they do in IVF treatments). The fertilized eggs (embryos) are allowed to develop for three days and then one or two cells are removed from each embryo. The genetic material from the cells are tested and the genotype of each embryo is determined. Only those embryos that are AA are retained and the rest discarded.

Break up 
For some couples, the amount of time, energy, emotions and finances required to have healthy children is seen as too demanding. They opt to go their separate ways and try to find love elsewhere.

Now this is the responsible way to enlighten young couples on their options regarding Sickle cell disease on not the driffle that I see being peddled on the basis of religion or lack of tact.  No one has the right to tell people what to do in these situations.  Its their decision to make and not anyone else's.

Okay rant over...............

Happy New Years, 2015 is looking to be a cracker of a year!!!

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!!

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!!

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)