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