Sunday, June 18, 2017

JUNE 19; IN SICKLE CELL DISORDER AND IN HEALTH

How did it get to be June 19 so fast? I mean, I'm not complaining, nooo I'm amazed and grateful that I'm here again. Another year and well. In fact, so very well I can hardly believe I've been suffering for the past year!

Yes, so, if you've read my last post, you'll remember I wrote about my experience and how I've been having constant bone pain aka sickle cell crises ... I can't remember, did I write on that or just the PTSD? Please don't make me read my post *BBM crying emoji* Anyways, I have been having recurring SC crises and I've been put on basically all the analgesics there is to be put on; from the ones that make me slightly dizzy and drowsy and sleepy to the ones that out right make me a drunken person who has never taken alcohol to point of being drunk. Yes please. I have taken alcohol, as a kid, when all those scammers would come to desperate mother's of sickle cell patients and tell them take such and such it will CURE sickle cell in three months and the poor blessed mother's would obey. Not being medical or scientific to understand that diseases of the genes can only ever be cured through the genes or never cured at all. But, again, I'm swerving *does Fast and Furious swerving back to original lane* ;) and some of those analgesics gave me severe stomach aches and I believe a bit of dependence on them for when I stop taking I get headaches. Headaches from Hades in the down under world! I think I need a new head, a new GI system or a new self, I wouldn't mind! Pretty please!? *Doe eyed*

The aches (crises) made me visit the accident and emergency of AKTH a lot and I got pricked a lot and my once very good and vibrant veins which used pink cannula began to disappear and then I degraded to blue and now I use the yellow and even with that, the Dr's complain that the needle on the yellow are much, much larger than any visible, useful vein. Word of advice, in your daily thanks to the Lord, be thankful for your veins! It started taking long hours and more than one Dr who gives it more than 3 tries to get a line. Sometimes we opt for IM analgesic before a line is set so as to ease my pain. It started to take a toll on me psychologically, I could feel it but no one could, I've become so good at masking my depression  it's a wonder I'm not fully ... Alhamdulillah! I hang on and find joy in distant love that is pure and will never die, hopefully. I think of how our beloved Prophet (SAW) endured so much but was a comfort to others and I say to myself "Girl! You whine too much! Appreciate what you have before that's gone too!" And damn right that's what I do! Plus I cry a GREAT deal, forget about the ones you THINK you've seen, you ain't seen NOTHING and you ain't gonna see too! It helps ease some of the burdens I feel I carry alone!

On a very lovely Saturday or was it Sunday, I can't recall, Dr AD Waziri came to visit, and, yes I've mentioned it in my last post but, tough! He saw as far as his medical haematological expert eye would allow him see, that I was looking awful and needed help and he said I needed to start Hydroxyurea, I did. I have not regretted listening to him. I feel more energetic and probably less loco *LOL* could it be that it has effect on the psyche as well? That would be great, truly. Especially since its side effects are a lot. A very, very lot!

So, I'm on hydroxy and I haven't had crises in three months just one three days back (June 16) probably stress from exam or something. Twasn't so severe but it was aching and disturbing. Although I still experience headaches and that's another story for another time.

Is it a #Happy #WorldSickleCellDay or JUST a #WorldSickleCellDay? I really dunno and honestly don't care! Everyday to a sickle cell patient IS World Sickle Cell Day. We seem to be increasing in number in as much as we definitely are dying in multitudes as well. Sickle Cell is not on the top 10 list of Non-Communicable Diseases and yes, I know it's a Hereditary Disease but then...I'm tired of arguing!

Good night! 

1 comment:

  1. I want to comment but have no words. So i say a du'a. May Allah be your strenght and may He make it easy for you.Amin

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