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Y O L O

In the past 9 months I’ve done a whole lot of travelling; 6 different countries to be exact. That’s probably no big deal for any other individual, but it may sound slightly extreme for someone who is living with sickle cell. It has taken me years to be able to travel this much without risk and without fear; but believe me I have taken many L’s in the process.

Everyone wants to go on that ‘girls trip’ or ‘guys trip’ and I was no different, but I had to make the decision to miss out on many of these since sickle cell was not my best friend throughout my teenage years and early twenties. I missed countless girl’s trips and family holidays and lost out on everlasting memories as well as a lot of money. It sounds unbelievable when I think about it now. But I can say that I have always, sometimes reluctantly, put my health first when it comes to making travel plans.

The reason I am sharing this is not to gloat, but actually because of a comment that was made by a random person on my return from a recent holiday, which has since stuck with me. I assume they felt the need to make a comment since I had requested special assistance so I was in a wheel chair, and mobility aids such a crutches or wheelchairs seem to be an open invitation for people to pre judge.

“Risked it for a few days of fun yeh?”

Listen, some people may not know what a risk assessment is, but anyone living with sickle cell should and will most likely know; since the condition is so unpredictable and a crisis can literally come on at any time. Sometimes every day has to be an evaluation of likely risks, and what precautions I can have in place just in case a crisis comes on.

Every holiday I have chosen not to book, cancelled, or missed, has always been because of one rule I have which I will never ever break:

#RULE: ONLY TRAVEL AT 100%

I don’t know about you, but I feel uneasy leaving my house if my phone is not fully charged, so if my body isn’t there is no way I’m leaving the country.

Being sensible with sickle cell is not only a vital part of keeping well, but it’s a vital part of staying alive.

I say YOLO often, but I value my life and would never risk it for a few days of fun.

When this post is published, i’ll be somewhere in the UK wishing I was on the holiday I was supposed to be on, but had to cancel because my body is not at 100%. I’m sure wherever I am i’ll still be giving thanks for life though.

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A Future Cure For Sickle Cell?

Recently, an article has gone viral among the sickle cell community regarding a new pioneering treatment which has reversed a teenagers sickle cell disease by changing his DNA. I cannot even count how many posts I have been tagged in and messages I have been sent of this article. If you haven’t seen it, I don’t know where you have been!

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Now I am always skeptical of new “cures” and “treatments” when it comes to any health condition in general; because I believe in cause and effect. In my experience, EVERYTHING has a side effect; and sometimes those side effects can be worse than the initial problem you were trying to fix in the first place. For this very reason, I have never been one to go crazy sharing news stories of hope or to voice my views based on 1 or 2 media articles, since I personally do not take everything that is written by the media as fact. So when I was asked by the BBC to do a live radio interview pertaining to this new development in sickle cell, with one of the lead clinicians on the study who was quoted in the article; I was very eager to hear what he had to say first hand.

I knew everyone would have their own opinion on this, and being only 1 of 15000 people living with sickle cell in England; I wanted to be able to give fellow sickle cell warriors and their family / supporters the opportunity to base their opinion on direct information instead of it possibly being distorted by any bias I may have had. With that in mind, I decided it would be a good idea to record the interview so it could be shared for those who were unable to listen live at the time it aired.

The audio is around 16 minutes long, so here are some of the key points mentioned incase you do not have that time on your hands in this moment:

  • This is not yet proven as a cure; a lot more time, research and clinical trials are needed before this can be certain.
  • There was no mention of infecting the bone marrow with a virus; it is genetically modified using baby (foetal) haemoglobin.
  • Since the procedure almost 2 years ago, the teenager in question has had no symptoms of sickle cell and the disease process has stopped; so it does look promising.
  • It is an attempt to cure those with full blown sickle cell disease and not an attempt to prevent carriers from passing it on.
  • There are currently 7 patients in the US who are being treated with the therapy for sickle cell, however it is too early to comment on the results.
  • The same therapy is being used for Beta Thalassaemia and is more advanced with over 20 patients throughout the US, Europe, Australia and Thailand currently in clinical trials.
  • At this stage, patients would only be warranted this new gene therapy if there is no compatible donor for a bone marrow transplant.

Aside from feeling self-satisfied at the fact that the lead clinician in the study, professor Philippe Leboulch, complemented me on the way I described sickle cell and the nature of the disorder, I must say I was very impressed with his explanation of the therapy and respected his emphasis on the fact that he did not want to use the word ‘cure’. While the title of this post seems very optimistic (I am, and hope to remain a ‘glass half full’ type of person); I am not here to give false hope. At the same time however, we have to acknowledge the progress that has been made so far, and the fact that a company is actually sponsoring the development of a new gene therapy for sickle cell. I think it is fair to say that we are all hoping for a cure for sickle cell, and this seems like it could be a step in the right direction. The issue now is with them being able to carry out enough trials and research on individuals who are willing to try this new therapy. While there could be some very serious risks involved; of which we do not know the details of, I guess that brave decision would lie with the individual themselves.

 

 

In Sickness and in Health…

Dear future husband,

Thank you for having the ability and strength to make the promises you have made to me. Most people may not consider the meaning of such words, but you would have already admired me at my best, still loved me at my worst, kept me going in sickness and appreciated me in health.

Thank you for sticking by me and not breaking my heart after 5 years, because it took you that long to realise that maybe my sickle cell was too much for you to handle, and you didn’t want me to be a burden to your life.

Thank you for not seeing me as anything less than ‘normal’, and for not conjuring an idea that there are somehow things you would be able to do with someone else that you would never be able to do with me.

Thank you for being my rock through a recovery I thought would be impossible, instead of implying that somehow you being there for me would stop you from living your life.

Thank you for not draining my strength, and then mocking my weakness at a time when I was most vulnerable.

Thank you for not using my health as an excuse to not say or do something that’s really on your mind.

Thank you for all the times you have been willing to put in the work when I’ve been too tired to put it down like i do.

Thank you for accepting me, flaws ‘n’ all, and for your patience and understanding throughout our partnership.

Thank you for not allowing sickle cell to get in the way of our Love.

Truly Yours.

Note To Self

Happy New Year and all things 2017!

I didn’t plan for this to be my first post of the year, but I also didn’t plan for sickle cell to interfere with the plans I had in December last year and throw me completely off my game. I believe that in everything we are faced with, there is a lesson to be learned. So even if you can’t see it at the time; take note.

If this post doesn’t help any readers with something that they may be going through, it will definitely be here to help me if I get to this point again in the future.

Note to self: Trouble nuh set like rain.

(Problems often arrive without warning)

 

Despite the odd obstacle here and there, 2016 was an amazing year for me. But when everything in life seems to be on one continuous upward spiral, it’s easy to forget that down even exists. I did. That was until down and I were reacquainted thanks to my beloved sickle cell.

Of all the complications and effects that sickle cell can have, one of the worst things about it is its unpredictability; a sickle cell crisis will Gully Creep into your life quicker than you can say Elephant Man!

I went from enjoying 14 unforgettable days in Gambia soaking up some well needed sun, guest speaking at my own event, donating books and creating memories with some truly amazing people, to spending 11 torturous nights in hospital watching old people die (3 to be precise). One minute I was unpacking my case whilst whining up my waist to Tekno-Panna and reminiscing about the day I had when I wore that stripe bikini. The next minute I was on the ambulance stretcher high off gas and air with a sick bucket, sky high temperature and a pain in my back which I could only describe as a feeling like I was being crushed.

I hadn’t felt this unwell in almost 2 years, and as much as I passionately hate being in hospital, I’m sensible enough to know when I need to go. The last time I had symptoms similar to what I was experiencing I ended up in intensive care, so I knew I wasn’t going nowhere for a while. This was one of those times where I had to just accept what was happening and keep my backside quiet.

Almost two weeks of my very amazing life was spent in hospital, but by the end of it my life felt very far from amazing.

It was early one Saturday morning when I felt like I had hit rock bottom. It was just after 3am so the lights were off and everyone was asleep. I sat up in the hospital bed and was just staring into the darkness. One of the nurses walked passed and whispered a rhetorical ‘you ok’ as she did. I’m glad she didn’t wait for me to answer because I felt my face move into a very stink ‘if looks could kill’ expression as I wondered why she would ask me such a stupid question.

If I was ok would I be there?

Just like that I had this horrible feeling inside me like everything was sinking. I’m the biggest cry baby but I couldn’t even cry because I wasn’t upset or angry. I was just empty and numb.

I had no more energy to be ok, because I wasn’t.

I had no more energy to stay strong because I felt weak.

Note to self: A nuh same day leaf drop it rotten.

(One bit of misfortune does not mean total destruction)

 

Those that know me well would agree that I am one tough cookie when it comes to my health. Anything that comes my way, I can handle it. But I have to admit that this is one time that sickle cell made me crumble and I didn’t think I could.

There are no words that can explain what it is like to know you’ve tried so hard for something but to feel like it was all for nothing. Over that weekend, I reached a level of sadness that I didn’t think I could get to.

Since my mom and I have this corresponding cosmic connection she felt how I was feeling instantly, and my dad could tell as soon as he seen me that I didn’t look like my usual self. Despite having chosen the best parents I would need to keep me going in these situations, this was one I knew I would have to bring myself out of. No comforting words from either of them was going to make this feeling go away. I had to find my own reasoning to pick myself back up.

As I was leaving the hospital a few days later, the reality of the situation became apparent and tears of joy and relief began to fall from my eyes. When my mom noticed and asked me if I was ok and why I was crying. I laughed and said,

“We used to have to do this 4 or more times a year. If we only have to do it once every 2 years now, I can handle it still”

It’s funny how when we’re down we find it difficult to see a way back up again; but there always is. Within a week of being home I bounced back to my normal self. I had a great 25th of December and was still able to party for the new year.

The come back was real!!

My Friend Jen

Writing a book related to sickle cell is something that I have thought about doing for a very long time. I have always wanted to do something to create more awareness of the condition and to help others living with it, but I used to think ‘how can I help anyone else if I’m not able to help myself?’ After taking control of my life and my health, I finally got to a stage where I was ready to do what I had always thought about doing. That being said, there was not a strict plan to sit and write a book. I am a firm believer in the saying ‘Nothing happens before it’s time’, and that saying is true to this situation. This book was birthed out of a balance of divine time and energy.

One night I was in a happy and positive state of mind. I was thinking about everything I had done and achieved in the months leading up to that moment and I was feeling exceptionally proud of myself. I realised I was living a life some people would probably dream of, even though I have this illness that’s supposed to stop me. I said to myself,

“Jen, there’s nothing that you can’t do.”

And that sentence was basically where it all began.

My reason for writing a children’s book stems back to my childhood and growing up with sickle cell. My Mom taught me the basics like keeping warm, drinking lots and getting enough rest from a young age. But even though I knew these things, sometimes it was hard because I didn’t really understand why I had to do them. I knew that I would get sick, have to go to hospital, have a needle in my arm and have to drink nasty medicine etc. But why couldn’t I just be like everyone else?

Primary school made it harder because it singled me out. If it was too cold I wasn’t allowed outside at playtimes, and then everyone would ask me why. Sometimes I would contemplate answering but truth was I didn’t really know so it was easier to just say “Miss said I can’t”. The worst thing was, I knew my teacher didn’t really understand why either, she was just following my Moms instructions. Other activities like swimming and school trips were also things that I sometimes had to miss out on. At that age all I really cared about was being what I thought was ‘normal’ in my eyes; I wanted to play outside, have a snow ball fight in the winter and wear a summer dress in the summer. I just wanted to be like everyone else.

As I got older and went on to secondary school, college and work, I kept the same mentality when it came to my health. I used to play my condition down like it wasn’t a big deal, even though it really was. I can remember in secondary school being so blasé when I told my friends I had a stroke over the summer holidays, and had to have blood transfusions every 4 weeks to stop me from having another one. Then there was a time in college when I had acute chest syndrome and I ended up in intensive care. For a long time I acted as if I didn’t remember much and didn’t know why everyone was so worried thinking I was going to die, but the truth is I remember everything; I remember having what I think were hallucinations of myself as a child and of memories of things that had happened in the past; I remember the out of body experience I had where I was literally looking at myself in the hospital bed, while my Mom and Dad stood over me crying; and I remember being in a very strange place where there were loads of people who I felt like I knew, even though I didn’t recognise them all, and one of them coming up to me and saying ‘Not yet’. So I know why everyone was worried and I know what really happened. I have never shared that before because just the thought of it, let alone writing it, still brings tears to my eyes. For me, acting like my sickle cell wasn’t serious and didn’t affect me or make me different was my way of feeling ‘normal’ and being like everyone else.

It has only been in the past few years that I have come to the consciousness that sickle cell is a serious condition, and acting like it isn’t will not change that fact. It also will not help the fact that a lot of people don’t know about the condition, even though it is one of the most common genetic disorders.

During the process of completing my first book, a strong, beautiful Queen asked me ‘Why?’ My response:

“I want to give a young child with sickle cell the peace of mind that I didn’t have.”

I believe that a lack of awareness and understanding about sickle cell made my younger years harder than they needed to be. There wasn’t a lot of information available relating to the condition, and the little that was available was very negative and uninspiring; especially for children. Now as an adult, I feel like there is still something missing for children growing up with sickle cell today. Yes there is tons of information, but information can be boring for children. Yes there are stories, but sickle cell affects everyone differently so one person’s journey will not be the same as another’s. The My Friend Jen series will combine these two things together in a fun way with a positive message behind it.

I urge parents, teachers, doctors, nurses and everyone in a position of influence to buy the My Friend Jen books and encourage others to do the same. Growing up with sickle cell I can only remember being told what I can’t do, but as an adult I now know there is a lot that I can do. I wish for every child growing up with sickle cell, or any other condition that may make them feel like they are different to know this too.

Visit www.myfriendjen.co.uk

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World Sickle Cell Awareness Day 2016

Since today Sunday 19th June 2016 is World Sickle Cell Awareness Day, I thought I would share a few words.

Sickle Cell is a serious, life threatening condition, which I feel some people fail to realise. There are so many complications that can occur, some of which are uncontrollable and at no fault of your own but just as a result of having the condition. I know many people that have lost their battle with Sickle Cell, including one of my closest friends. It’s tough having to hear of another life lost to Sickle Cell knowing that I have the same condition.

It is for that very reason why I have to stay as positive and as in control as I do. I try my best to live a fearless life and do only things that will make me happy. Every day will not be perfect. Most days I look and feel a million bucks, but some days I don’t. Most days I live life to the fullest, but some days I physically can’t. Despite all that, Sickle Cell has made me who I am and I wouldn’t change ME for the world.

 

 

Help a Sickle Warrior out…

– Give blood: Many Sicklers need regular blood transfusions or blood exchanges to stay well.

– Donate to a local Sickle Cell Charity/Organisation.

 

Taking Control

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.

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