My True Warriors and Fighters...

Living with sickle cell…

It might not be labelled cancer. It might not be diabetes but it is a disease. It is affecting people, young lives and it’s a struggle living with it.

It is Sickle Cell Anaemia.

Be Enlightened

Personally I think you haven’t met with pain till you’ve suffered from sickle cell and you lay there helplessly with not a drug in sight strong enough to cure or ease your pain.

Have you ever woken up and your biggest decision of the day is whether you want to continue living or not because your pain is so unbearable and you do not wish to prolong your sufferings anymore?

Be In The Know...

 Have you gone to bed well and healthy only to wake up few hours later with the most excruciating pain ever throbbing and gnawing at every organs in your being?

How many times have you asked God to take your life because your hope and faith ran short? You light at the end of the tunnel wouldn’t come on? Or you just feel there’s nothing left to live for? How many times?

Try and Understand

Have you laid in hospital bed for weeks, in pain, life at a standstill, crying nonstop as pain slowly gobbles you away?

Ever made plans, packed your bag, called your friends, bought your tickets and all but you couldn’t make it because you went into crisis few hours before your flight and ended up at the hospital?!

Ever woke up and even to dial an ambulance becomes an impossible task because you’re in so much pain and you can’t move, not even a finger?

Did You Know...

Jourdan Dunn's Son Riley Battles with Sickle Cell too?

Ever seen tears in your mother’s eye because she can’t ease your pain and the only thing left for her to do is to sit and blame herself tirelessly as you wail helplessly in intense aches and pain?

You go through one blood transfusion after another and the back of your hand is full of scars from countless needle drills from nurses and doctors trying to find your veins.

You have to watch the type of activities you participate in constantly, watch what you eat and you don’t dare miss a day of your penicillin and folic acid.

Did You Know?
Larenz Tate battles With Sickle Cell Too

Your life is no longer yours, well if you’re brave enough… you screw the odds and dare to have a life!

In severe pain, you crawl to the door because you live alone and you need to let the paramedics in. Do you understand that level of pain?

You walk into gathering and you have people asking you why your eyes are yellow? It gets tiring and exhausting.

You’re looked upon as an invalid and a disabled person to the point where everyone worries about you standing for a long time or not dressing warm enough in the cold or even not eating right or simple thing as not drinking enough water.

Sarah Stevens
A Soldier...a Fighter...a Survivor!

Have you tried saying the Lord’s Prayer and you totally forgot how to? A prayer you learnt since you were 7 but in time of distress and pain you can’t even remember how to say the first few lines so you ask your teary-eyed mum by your bedside to do it for you. Yea imagine that.

Does the mention of word spleen scares the shit out of you? Well to me it does.

 

It Sure Does...

Your handbag, purses and wallets looks and smells like a walking pharmacy because you don’t know when next that cruel pain will make a comeback. You never really know and there’s nothing you can do about it.

Sometimes we suffer stunted growth, big protruding stomach and constant loss of weight but you don’t understand and you will want to ask me why am I so skinny or if I’m pregnant or where does all my food goes. Stop!

You have to tell your university or work place that you have been admitted….again and again and again and most of the time no one believes you. You’re on your own. Exhausting!

Manty Marah
A Soldier. A Survivor

Some days I will chose to act like a soldier and drag myself out of bed only for you to see me and assume I am lazy or I do not have a care in the world. You look at my life and made your judgements. Walk in my shoes please and tell me how that feels.

What do you know about morphine and painkillers? We know all the names and their after and side effects. Yes a sickle cell patient lives on painkillers.

Francis Davies

A Fighter. A survivor

You look in the mirror sometimes and all you see is sickle cell stealing the melody from your life and you’re wondering when the music is going to stop. Washing away your sense of accomplishments… One raging pain at a time.

A Fighter and a Survivor!

You just have to be a soldier for yourself. One strong, hopeful soldier.

You walk into your local hospital and the doctors and nurses know you by name, even the cleaners and chefs know your specialties. Hospital is not home and no one should be that frequent there.

Some days you wake up and you’re fit for nothing. You’re not ready for the world because your breathing is not right, or your ankle hurts so bad you can’t walk, or sometimes you’re tired, just really really tired but you won’t understand.

You watch your peers drop dead, one after the other and you’re thinking, am I next?

You can’t live like everyone else, there is a limit to what you can do, the distance you can walk and the places you can go and how many kids you can have. Your existence is practically limited.

N'mama Dao
A Fighter. A Survivor

Pray it’s not the two of you with the disease in the same family because then you have to watch the other in pain and guess what You can’t do anything to help them and the worst part is you knowing the severity of the pain she’s going because you’ve been there. A mother’s tragedy.

Woe betide you fall in love with someone who has sickle cell. Then you have the heart throbbing decision of whether you chose to be in love and have no kids or break up and find someone else.

It doesn’t end there, you have to deal with people who do not have a clue what sickle cell anaemia is so they think it’s contagious. They keep away from you and treat you different.

You have employers who think Sickle cell anaemia automatically renders you unreliable therefore you become unemployable…you’re already at a disadvantage in life because of something that you didn’t chose, something you have no say in, something that was genetically imposed on you.

But most time we don’t complain, we go on steadily, fighting every pain and beating every symptoms because we know that is our life now. We learn to live with it and manage it. Most people do not understand what it takes for a sickle cell patient to go through each day.  Most people do not understand and frankly I do not blame them. Much attention is not given to sickle cell patients, neither is much sensitization given.

A Disease Known Is Half Cured

You fight for each day and each hour of your life because you never know when the next crisis (sickle cell pain) will hit you. But no one understands.

This is not a pity party. We are not crying for help. We do not want you to feel sorry for us. We are not asking for your tears. We want you to understand, we want you to be considerate. We want you to be enlightened.

Be nice. Play nice. Life is hard already, we do not need anyone to make it harder.

Personally I have the utmost respect for every sickle cell patient out there. You’re a soldier. You’re fighter. I know what it means to get up and find meaning in each passing day. Keep going and screw the odds.

Inonu Khyne-Sam
A Living Testimony. A Survivor. A Fighter

Even if we have to do this daily, we will because it is our life and we have accepted it. No cure but with the help of God, we are managing just fine.

We are going to be just fine

And when you feel the storms of life assails remember, God never gives you a load that you can’t bear.

Again I say…this is not a pity party!

With this, i'll like to say thanks and express gratitude to all the people helping us, from the doctors to the hospital chefs, from our parents to relatives, to our friends and to every passing stranger who have rendered help.

We say thank you and we do not take you for granted.

I Salute Each And Everyone Of You Warriors.

Continue The Good Fight Of Faith!

... and to the beautiful souls we've lost, May your gentle souls rest in perfect peace. 

Till then 

Xoxo

Trapped Within Four Walls

The thing about four walls…I mean the thing about being trapped within four walls is that it makes your mind wander. It forces you to think, well for me at least. It slows you down, you see things in waves of perspectives. Maybe because the voices around you are less and the ones in your head becomes active and extremely loud.

Four Walls

Sometimes we are so busy dashing and running towards the finish line that we forget the purpose for which we started running in the first place. We become inattentive to the journey and we run right passed our blessings and we pay no mind to the things that really matters.

Ever so often the price is not as attractive as the beauty of the journey. When we look back we realise we have created memories we never cherished and moments that we’ll never get back. We only tend to appreciate the journey in the end.

We plan and we imagine, we dream and we vision the future, All the while forgetting the little important details along the way.  And above all we forget that our lives are not ours to plan. There is a master up there and he makes everything beautiful in his time. Not your time! Understand this and let that resonate.

I planned and imagined and I forgot there’s a God whose plans are better than mine, whose timing and plans are greater than mine and who’s able to make all things beautiful in his time. Did I actually forgot or was I too busy running a race i know nothing about?

Swimming in this euphoric water balloon. It was bliss. It was where you’ve longed to be, a place that felt like home, where all your fears are put to rest till the thought of the end churns your whole being. It was that place.

Don't Wake Me Up

Maybe I didn’t forget and I wasn’t busy either. Maybe I was just a little scared of the reality. Maybe I wasn’t mentally and emotionally prepared for my truth. Or maybe I knew the truth and it felt like a road I’ve walked before, a book I’ve read before and a very familiar story but the thought of it frightened me. I was terrified.

I knew!

Trapped within four walls...

Whilst everyone was popping bottles and cheering the New Year on I was in hospital fighting for my dear life. It happened so much that this was one of the severest attack I’ve had in a long time, medications that used to work, ceased to work on my body. My body was working against everything it was used to.

Was this a sign?

All through my years of fighting with this illness I have never been hospitalised over the New Year or even Christmas…so this was a first for me. God has his ways of pulling the stubborn ears of His children and i think i was just experiencing mine.

As I lay there I thought, they say everything happens for a reason….that thought kept me going and I knew I was going to pull through. I knew i was going to pull through because what was left to hang on to was just God and hope.

Respect The Journey...

I made plans for my new year’s already, I had things I wanted to do and places I wanted to see but God was laughing at me I’m sure and like a stubborn child he drew my ears and kept me in one place, trapped within four walls.

I needed that.

I am thankful that God hasn’t let me go, because I’ve let Him go, lots of times. He rescues me time and time and again.

The thing about these four walls…

I lay there in the hospital, nurses and doctors coming in and out and I toiling in pain and anguish. You have no idea!

What is the point of running and rushing if you’re going nowhere fast?

Take time to smell the flowers!

Every Once In a While, Slow Down.
You're Not That Busy!

We get so caught up in this race that we don’t even realise we are actually in a race. We do not give ourselves time to think and evaluate our lives. We allow life to take control of our lives. That is not living.

Well that’s what four walls are for…or we can call it recess. A time to evaluate and re-evaluate your life. Our lives must be handled with care and protection. Our lives must be full of purpose. Our lives be handled with love. Treat yourself in such a way that whoever comes into your life will not have a choice but to treat you even better. Remember you teach the world how to treat you.

Be Your Own Hero...

Let’s take a car for example, if you’re busy running this car in all directions without a regular check-up or any form of servicing, eventually it is going to stop serving its purpose and break down. Maybe out of lack of attention or maybe out of lack of care, other times its just mere exhaustion and abuse because things get tired too.

You have all these what ifs in your head and all these unanswered questions. We are seeing all the red flags and warning signs but we’re too busy running to the finish line. Even when you need to stop and service which could mean anything from consulting God to just simply resting and look how far we’ve come. Most times when you race like that, you get to the finish line and then you notice that you have been racing for no reason at all. By then it’s a tad too late.

Wasting time is a dangerous game. And time is a luxury not available to all.

Another thing that came to mind is that in every situation we find ourselves we must be able to give thanks to God. Just because we are in pain doesn’t mean we should be mean or rude. From my closed curtains in the hospital, I could hear the pain and anguish from the lady who was next to me. I had it bad but hers was no way compared to mine…..she had it worst. The easiest way to be grateful is to think that it could have been worse.

On that sick bed was where I evaluated my life. On that sick bed was where I made my New Year resolutions (yes I made couple and I am not going to tell you). On that sick bed was where I grew a new found appreciation for the simple fact that I know God. On that sick bed I handed my life back to God, where it belonged in the first place. On that sick bed I just wanted to know God more. On that sick bed I found a solace in God.

On that hospital bed was where I learnt few more valuable life lessons…

• You have to be your own hero (This wasn’t a quote for me anymore, this was my truth)
• You are stronger than you think, waaayyy stronger
• Miracles happen and there is a shift when you decide to FULLY trust God.
• Sometimes the hardest decisions we NEED to make are the ones that will hurt us the most
• As hard as it can be sometimes, try to be a good person
• People don’t owe you anything, always be grateful
• Just because you’re a good person does not mean that the world would be good to you.
• Self-discipline… Exercise and practice it
• God doesn’t give you a load you cannot carry
• It rains the hardest on those who deserves the sun
• It is okay to cry
• Always be stronger than what you suffer…whatever that is
• There is something about HOPE. Never lose sight of it.
• Don’t treat people the way they treat you, treat them better

Let That Bee Your Thing

This is the life, this is it. Some days are grey, some days are dark…some days darker than others. On better days the sun will shine for you and you will wonder if all that brightness is for you. Well that’s how life is.

Take one day at a time, the good, the bad and the ugly. Do not rush through life. Rely on God fully because with all your letters before and after your name, you still don't know it all. And never, never ever lose hope!

This is my own truth. What’s yours?

Till then

Xoxo

Is There Ever Going To Be A Cure?

As a sickle cell patient, I have come to realise that whenever i am in pain from Sickle cell or lose a friend through this dreadful disease,there is only one question that comes to mind:

Is there ever going to be a cure for Sickle Cell?


This is a question that has been bothering me for a very long time. For those of you who don't have a clear knowledge of what Sickle Cell disease is,here's a short and simple definition of this complex disease.

Sickle cell is a blood disorder wherein the body produces sickle-shaped red blood cells(vision the garden tool,sickle )instead of a normal round red blood cell. These sickle cells are sticky therefore prevents normal blood flow through blood vessels and organs and when our organs are deprived of blood,this becomes VERY painful and causes a crisis,(a term used to describe pain in a sickle cell patient). This eventually damages vital organs and causes infections.

Sickle cell is mainly common in Africa,Saudi Arabia,India,Caribbean islands, Mediterranean countries, South and Central America. One thing about Sickle Cell,You don't have to be rich or poor for you to be affected.

I am now in my 20's and I still suffer from this disease as i was in my teens and childhood, together with my younger sister. Growing up,i have lost several friends through this disease. Its not something i take delight in talking about but then again someone has to at some point as some people have lost the fight of this disease due to ignorance and many other reasons such as lack of care, especially in African countries where facilities are limited.

Dont get me wrong, i appreciate the doctors' effort but is there ever going to be a cure, a total cure other than just mere management of this disease?? They have managed to conquer its causes, how it affects the body, and how to treat many of its complications but still no cure. Personally i think there is more to sickle cell than just curing its pain with Strong pain killers such as Morphine etc....what about the damage it does to vital organs that leaves a patient disabled for life??

A young friend of mine recently lost her life through Sickle cell (May her soul Rest in Perfect Peace)and whenever this happens, it makes me think that it could have been me.

Sickle Cell is an inherited disease. Fighting sickle cell is tough,especially when you know its through no fault of yours and there is nothing,absolutely nothing you can do to prevent it.The constant fear of knowing you can go into pain at anytime is dreadful.There are so many limitations as to what you can do and cannot do,things you can and can't eat is,it's like living your life contantly on an edge.

On the bright side, with constant care and attention a sickle cell patient can live life to its fullest,but again just like everything else in life, nothing is Guaranteed!

This is not a cry of self pity,its just my way of passing on my own knowlegde of a disease i suffer from and maybe,just maybe it might help save a life somehow,educate and enlighten.

The question still remain, Is There Ever Going To Be A Cure?


To all Sickle Cell Patients out there:

Don't let ANYTHING hold you down,the sky ain't even your limit....Remember,you are not ALONE. Keep Smiling!