Hi readers, my name is Jenica Leah. Some of you may or may not know that I was born with Sickle Cell Anaemia. I never saw myself being able to share something so intimate out of fear of other people’s opinions. I have come to realise that my opinion of myself is what matters more, so I am ready to face my fears. I hope that in doing so I may be able to help someone else who may be going through something similar.
On the 24th February 2015, my doctor told me that I would need to start having blood transfusions every 4 weeks in order to keep my Sickle Cell under control. I was told that if I didn’t start having blood transfusions, my health would deteriorate and I would be in need of a blood exchange within 3 months. Since I had already been through years of monthly blood transfusions as a result of having a stroke when I was 13, the thought of having to go through it all again in my adult life brought tears to my eyes. I was not about to go through all that again. So, I simply said “No”. This time I was going to be in control and make the decision I felt was best for me. Obviously my doctor didn’t accept my answer that easily and we ended up negotiating over my health. In the end, we agreed that we would wait and see what happened in 3 months time, if my doctor was right and I started to deteriorate then I would do what was advised.
Well 3 months turned into 6 months, and 6 months turned into 9. Today, 1 whole year later, blood transfusion every 4 weeks for who please? Certainly not me! Lol.
Today is like a mini birthday for me and a part of my celebration for reaching this milestone is being able to share my journey with you. So here goes.
When I turned 25 in 2014 I became a different person; an unapologetic version of myself who was not afraid to stand in my own truth. It could have been due to the fact that I had a major operation scheduled shortly after my birthday that year. I’m not sure, but it was as if a penny had dropped or something had clicked and I finally decided enough was enough. Life is too short to not put my own happiness and self love before anything or anyone else… I loved the new me.
I began to get to know and understand myself, so much so, that it became easy to identify which situations in my life were bringing me happiness, and which ones were bringing me the opposite. My health was a particular situation that was obstructing my happiness at that time, so I had to take the time to ask myself why. Eventually, the answer came to me; it was because I was not in control. I was just going along with whatever happened or whatever I was told would happen with my health, and just accepting it.
I thought about this for weeks. (I had a lot of thinking time during recovery from the surgery I had). I would speak out loud to myself… because I do that sometimes;
“Jen, you’re the type of person who likes to do what you want when you want, so why have you been allowing doctors to make decisions that they think will be best for you?”
“How can someone else know what is best for you?”
“Why are YOU not in control of YOUR health?”
Deep down I knew why, but it was difficult for me to accept it; sometimes it’s hard to deal with your own home truths. My home truth was that I was scared. I was scared to take responsibility for myself getting sick if I took control.
It’s easy to blame ‘Sickle Cell’ and ‘the doctors’ for things that go wrong, but what about ‘you’.
Some people may disagree with that statement, but I know it to be true from my own experience and what I have seen of others. If someone with Sickle Cell has a really bad crisis, is it just because they have Sickle Cell? If the doctor gives you medication to treat one problem but the side effect causes another, is it just the doctors fault? What have you done for you lately? That’s a question I had to ask myself. Am I eating the right food? Am I drinking enough? Am I resting enough? These were all things that I could control, but I chose not to at the time. I had to make a change. I had to stop being scared. From that point on I decided that if I’m going to be in pain, get admitted to hospital and whatever else may come, it will be because of my own actions, not anyone else’s.
That decision changed my life. For the first time ever I began to think more about my actions and what would happen as a result of them. I realised that if something was wrong, there would always be a valid reason; cause and effect. I delved into different foods and what value they brought to my body and actually changed my whole diet completely. I evaluated my personal life as I realised that my mood affected my health; negative people and negative situations drained energy that my body needed, so they had to go. I joined a gym and introduced regular exercise into my weekly routine. Most important of all, I laid off the drugs. Yes, you read that correctly. There had been times where I would take regular doses of opiates every day to cope with my chronic pain and to manage any sickle crisis I had. Taking morphine was as normal as having breakfast. The thought of what damage these drugs were causing internally gave me enough motivation to do something about it. Doctor’s may prescribe strong medication but they don’t tell you how to stop taking it. I had to start from square one and get in tune with my body all over again. I had to learn to tell the difference between real pain and mimicked pain that was a side effect of coming off opiates.
Let me tell you now, it was not easy making changes to my life. Thinking about how those closest to me must feel when they have to visit me in hospital and see me crying helplessly in pain made me feel guilty. Guilty because I now realised that I had actually been doing nothing to help myself. That guilt however, was also my motivation. I didn’t want the ones that I love to have to go through that again. That motivation kept me mentally strong throughout my journey.
Today, I am so proud of myself for accepting my truth and facing my fear of taking control of my health. I believe that everyone reaches a point where enough is enough and in that moment you can choose to make a change. I chose to make that change and have never looked back since.
9 Comments Add yours
Well Well Well my darling beautiful neice i applaud you on this . Your right it is hard hearing your in pain and I ain’t gonna lie sometimes I am glad I live in the capital a fait distance away from you cos you know me Aunty Tiny Tears to see you in pain would just make me cry everytime. I love you girl and I love your amazing story and journey you have travelled. I will be there for until either yours or my last breath.
Keep up the courage and the positive energy
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My Sister from another Mother. I am sooooo proud of u and absolutely enjoyed reading this blog which I know will change the lives of many not just sickle cell sufferers. You are a gift from the Most high and ur purpose is becoming more clear 2u. I’m glad u have not let past experiences ruin ur future. You have seen pple with the same condition as you pass. But you keep strong and u dnt let nothing wat u up. U fight like a true soldier. Ur renk Ness made u tell the doctor NO but ur renk Ness has brought u here today. Keep being the inspiration that u r. Forever Fab, my home gurl, my sis. Love u. Til the end of time. Let’s continue 2 create memories. Xx
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You said it!
This is so inspirational!
I am so so happy you’ve taken control. When you refer to the diet and exercise changes … you’ve just given me that extra boost to keep at my aim to help people through nutrition not medication. Ive shared the most hilarious moments with you and know theres so many more to come … “beans… who got beans” … “I want beans…”
You’re amazing kind and just all the way through and through b.e.a.u.t.i.f.u.l!
Keep up this blog I’ll be following!
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I’m so glad I found your blog. I had been struggling with coming to terms with my 14 yo son refusing blood transfusions. Doctors made it sound like he wouldn’t survive without it and gradually I started to belief same without realising it. I guess if you listened to something long enough, so you start to think and believe it.
Your blog just set me free. He said about the same thing. he said; Mum I’m taking control here. I’m not just going to sign up to anything just because the doctor says so. It’s been a year since too and he’s doing okay. He’s not had a stroke like the doctor predicted and his last HB level (taken just this week) was the highest in ages.
Thank you for being open about your illness, I will definitely be following to keep learning about SCD.
It’s overwhelming to know that my blog has ‘set you free’, Thank you so much. Sometimes it is hard to come to terms with decisions, especially when you’re unsure of the outcome but your son sounds strong minded so I am sure he will be fine. I hope he continues to stay well and stay in control of his condition no matter what he is faced with. XX JL