SICKLE CELL DISEASE: MY JOURNEY AND EXPERIENCES AS A SICKLER! [A True Life Story]

Plus Health Tips and Survival Tips For Sicklers.

sickle cell

My experience with sickle cell disease became less painful as I gained more knowledge. My toughest years were between ages 5 and 17 when I found myself in the hospital more often due to series of crisis. I cannot recount how many blood transfusions I had  — but the last I had was at age 8.

THE PAINS

The pains were usually extremely severe — always like I was face to face with death! Thank God for the pain killers but then, they never lasted as long as I would have loved them to, so I’m always back to screaming and begging for more!

My worst nightmare was the pain I had in my left leg for so many years. It was difficult for me to walk sometimes, because most times it got swollen and became hot to the touch and painful for me to stand for even 2 seconds. They said I had a hole in my bone and they needed to operate. But, no! I just wouldn’t hear of it! I was about 9 years old when the doctors said that. Thank God there were other options. I took a particular antibiotic drug 6 times a day for months accompanied with regular check-ups every fortnight (unlike the usual regular 6 weeks visits). It got better but I had to stop a lot of the activities I loved, like climbing, running… I literally had to be off my feet as much as possible.

This particular time, it was as if the world slowed down, everything seemed to be slow. At a point I could not really eat, all I had then was fluid. Mostly malt drinks mixed with milk. I was always tired. My parents worried a lot because the drugs were becoming too much. I didn’t sleep well because I had to get up at night to take my medicines.

I missed school frequently because I had to see the doctor often especially if my parents felt I just had to. And this meant traveling all the time and looking like a lab rat when all the doctors took turns to make their observations! As much as I love to travel, this particular period in my life was not fun.

Stress and cold are my number one triggers for crisis, as soon as I understood this, everything changed for the better.

THE BAD AND UGLY

My peers always got talking because I had to disappear from school often, especially with the fact that we always had to travel from Kogi state to Edo state for my regular checks at University of Benin Teaching Hospital. The story had it once that I always go to change my blood! #Laughs

I loved sports, but no matter how hard I tried, I was never allowed to even participate in any in school. I felt all alone at school most times so I never attended any of the the inter-house/school games while in secondary school.

In fact everything was different. I was smaller than my age mates at a point, but I think I caught up later. People said I would die, that I would never get to be 20 years of age. [#smiling] I’m 30 and counting.

I get a lot of eeeeyaaah and pity-moments, and I always used it to my advantage! Naughty me! This part allowed me to be the class famous noise maker because I was untouchable. I was naughty at home too because no one dared touch me, and yes, I broke most of the doctor’s rules — I didn’t care; I just had to go swimming with friends, play in the rain and do any other thing I liked then!

The worst part of it is when people look at you like you have a plague or something. People always feel Sicklers can’t fall sick, like have typhoid or malaria or even headache, without it being a crisis. Funny though, but it made me some kind of recluse at some point because to everyone around, it had to be crisis.

HOW I HAVE SURVIVED THIS FAR

#1: Regular clinic visits and routine drugs

I have a 6-weekly regular visit to the doctor. I have been regular — and stick, religiously, to the medical prescription the doctor gives.

#2: Support from family and friends

I’ve lived crisis free for about 5 years until June 2015. Family is everything. They have always been there. They made sure I was always happy because the doctors always placed an emphasis on emotional well-being and how it can help boost physical wellness.

I said I had my last blood transfusion at 8 years of age, right? Well, here’s the story

I hated food and anything green. I’m the 5th child in the a family of 6. The 2nd and last daughter and obviously daddy’s little princess. I can’t quite remember how I got to the hospital but I think it was from school. I loved to play a lot considering the fact that I was in between 2 boys (my immediate elder and younger brother).

I never liked being dared to do anything: I played football, raced with them, climbed trees and did almost anything they did. My mom’s mantra to me then was “don’t you know you’re a girl?” Back to that day, I guess I had played a little too hard or something, but here I was on that same hospital bed. My mum was crying. She was hysterical, as always. They all were looking for a blood donor. My dad was already on his way to Port-Harcourt. He came back because his princess was in the hospital, but he wanted to continue his journey as soon as everything was calm. The doctor refused to take his blood unless he agreed to rest afterwards. To cut the long story short, 2 donors came in — a family friend and a distant relative — and off my father went on his journey.

My mum cried all through, she begged me to eat but I didn’t like food plus I was not in the mood for food. In her cries, she asked God when all this will end — and right there and then, I said an earnest prayer because I didn’t want to see her cry so much. I asked GOD to make it stop and, well, that was the last time I had a transfusion. I still got sick; my blood level, in fact, used to get very low, as low as 15% and dropping… but I still never got transfused. There was a wonder drug that made it possible for the blood level to normalize within few days — Jubi, now known as Jobelyn. Though quite expensive then, Mom and Dad made sure I never lacked it.

#3: Self-love and Positive attitude

I also make sure I stay happy no matter what. Even after he broke my heart saying his dad said he can’t marry me because of my genotype! Yes! I tried to kill myself, I hated the fact that my genotype was SS but I looked up and remembered how much I am loved, by God, family and true friends. I decided to keep loving me and stay happy, afterall, who is perfect in life? None!

#4: Proper Nutrition

Good food. I’m so glad to be Nigerian. I eat foods and fruits — in season and out of season. I learned this in the University. I learned the hard way and I’m glad I did. My first year in the University was a bit tough for me so I decide it was time to take care of me and started eating food. Believe me my mum is still amazed.

I drink lots of water — plenty!

#5: Avoiding Crises Triggers

I stay very far away from any kind of stress — emotional, social and especially physical exertion. Cold weather and I are not good friends so I make sure I have all I need to keep warm at all times. You never can tell when it will rain, you know.

Basically, understanding how my body works helped me a great deal.

I’m still standing and have climbed a mountain twice. Yea! I just had to — couldn’t help it! The first time was tough because I had pains for days but I was happy and I went back the next month and I’m really looking forward to doing it again and again!

Knowing that I’m loved by the people who matter most to me also helped. Most of all I love me and I’m committed to staying #SickleStrong for the right reasons. I’ve always known I was different and I love being different — you know, a special kind of different!

Catch ya! [#winks]

ABOUT THE WRITER:

Maureen is currently a Client Service Analyst for a multinational coy based in Lagos, Nigeria.

She has a degree in Biotechnology and is an advocate for sickle cell anemia. She craves for knowledge and is committed to helping those with real life issues. She’s an administrator and also a facilitator at House of Hope International — a group based in Abuja which is committed to grooming the young in issues relating to their needs (health, relationships, entrepreneurship, education, success, etc).

Maureen is also an Interior decorator and a luxury consultant.

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Dr. 'Malik Haruna King is a practicing Nigerian Medical Doctor and Sex Therapist. He helps people with sensitive health issues find answers to questions they are too ashamed to ask!