My Blog

About Me.

I would like to thank you all for stopping by my page.

I finally made my blog. As you can tell from my heading I to have sickle cell. I created this blog not just to tell you about me and how I deal with my sickle cell and being a mum with sickle cell, but for everyone to come together and share your ideas, information and get advice.

So here’s a little bit about me. Growing up as a young child with sickle cell was hard, but my parents always made sure that I had a happy childhood and was treated like everyone else. Yes I had to have extra layers of clothing on at times where I felt like a snowman lol, and drank a lot of water but back then I never really understood Sickle Cell. Apart from it made me ill at times, and gave my joints pain in the colder weather, where I had to go to hospital to get better. But as I grew older I started to understand it more and knew how to manage it on my own.

When I got to my teenager years I think my parents were more worried for me than I was lol.  I was in all the after school physically activities like Volleyball, Hockey, trampolines, Dancing ect. You name it I was in it lol, and the beauty of it is that they never said no just “Be careful and drink plenty and have a rest.”  So as you can see from a young age, I never let my illness dictate to me how I should live my life.

When I became a mother I worried more not for myself, but I was worried my son would have my condition. Believe you me I prayed so much that he wouldn’t have the life that I do. An I was blessed to have a healthy baby boy.  For myself I had noticed my Sickle cell, had become worse. Having had pneumonia while I was pregnant I started to have a lot of Chest Crisis then my Doctor told me about hydroxyurea.  I was like “Say what now” lol  I was handed a leaflet about it, and was told to have a read about it and then decided, if I wanted to go onto this new medicine. When I started to read it I went straight to the side effects part and I was like what hair loss, being sick and it being like a low dose of chemotherapy. Automatically I was like hell no, I love my hair way to much lol. When I went back to the hospital I told the Doctor thanks but no thank you can keep it. She then introduced me to another person who had sickle cell and was on this medicine. I already knew who she was as we both was pregnant at the same time. I was shocked as she still had all her hair and now has 2 beautiful girls, she changed my mind and my thoughts. So later that year I started this medicine and I noticed an improvement. I was having less crisis and I still had all my hair lol. Finally I felt normal again until I had yet another step back where I had a minor stroke causing me to loose slight use to my left leg. With that  happening I was put on EBT (Exchange blood transfusion). I was like “oh grate another set back”. With that happening I got to find myself and work out who I really was, and was I ready to give up fighting this race.

Along this journey I have made some wonderful friends here in the UK and also Internationally. I’ve learnt how to handle my pain much better, so I hardly visit a hospital for a crisis. An when I do go to hospital I always get asked ” What do you do at home as your never here in A&E. You should share your knowledge with other sickle people.”

And this is how I ended up starting a blog and a support group with other sicklers.

On my blog I will be sharing my handy  tips of how I manage my pain, things I do to keep fit. Also how I manage it while being a working mum, and having a relationship.

I hope this will help not just people with sickle cell, but everyone else who wants to know more about sickle cell or for someone you may know with sickle cell a loved one or friend maybe.

I am here to answer any questions that you may have and also I will do little topic forum’s, as I would like to know what everyone thinks about certain things.

I will also add links to other related sites for information about sickle cell.

And if you have got children or know someone with sickle cell and they are of a young age please go check out  My Friend Jen. This is such amazing book I’ve even got a copy for my son.

Thank you everyone xx

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7 thoughts on “My Blog

  1. Hello your story was great to hear my husband suffers from sickle cell and we have a daughter together he has no motivation and constantly blames his illness to stop him doing anything even leaving his mothers house I try to motivate him and make him believe he can anything he wants but he just wants to stay home on his Xbox what shall I do

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    1. Hi Nelly thanks for getting in contact with me. I can relate to your husband most days I do have down spells of where I feel demotivated and I look at my son and he pushes me to be the best. I would say talk to him find out why he is feeling like that. For some sicklers we find it fusstrating because we have no one to relate with or to share our problems with. Try and find activities that he likes that’s not a xbox lol. And try and make time for each other in date nights, family days try and get him back to when xbox weren’t around. But the biggest thing I would say is communication. I even saw a councillor when I was at my lowest and from talking about why I was feeling that way I noticed myself that I was giving in I was letting my illness control me and that was not me at all so talking about things helped I got my life back on track and I felt a major improvement and started to smile again. I hope this helps and I’m here if he needs to talk or u need anymore advice. Xx

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  2. Hey Marsh I’m very proud of you and the way you are taking control of the illness. I do have the crisis a little more often than I use to but I try to keep my blood level up by drinking alot of beet an kale juice also alot of water and keep the folic acid close lol. It’s definately a journey and I am happy you could share your experience with others.

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