Lu's News

Slowly but surely I am making my way back to my old self & I'm now starting to feel more like the old Lucy again.The Lucy who has suffered from health issues since being a toddler & has handled this crap her whole life. I got lost in the misery of my negative thoughts and I became someone I have never wanted to be, a self pitying moper was what I turned into. I felt sorry for myself because of my health conditions. I thought the world was against me & I started believing the lies I was telling myself. I thought I was useless. I believed people saw me as less than them because of my medical problems and I let that bother me, I let the dark thoughts control my life and I became more anxious day by day, feeling inadequate compared to others. Eventually though the depressing cloud that I was lost in has started to lift & my attitude is going back to the way it always was. I don't care if someone sees me as less than them because of my problems anymore, if they w...

Last week I had a follow up appointment with my Cardiologist, he told me that the results of my Tilt Table Test showed that I do, in fact have P.O.T.S. Which stands for Postural Orthostatic Tachycardia Syndrome. It means that there is a drop in the supply of blood returning to the heart & brain after a small amount of activity, such as being on your feet for a few minutes. The symptoms for me consist of dizziness, sweating, & palpitations, which I have been experiencing for a while now and it was that which led the Doctor to test for P.O.T.S. He told me before the results came back that it was likely I did have the condition, based on my symptoms & the fact that I also have Marfan Syndrome, which is something that often goes alongside other health problems, such as P.O.T.S, so it wasn't a complete shock to recieve the diagnosis as I was sort of expecting it, but I hadn't prepared myself for how I would feel once I'd been given it. I felt overwhelmed as I left th...

Up until last year I had kept very quiet about my Marfan syndrome diagnosis since I was 16 years old, it remained unrevealed to almost everyone (including some family members) I kept it to myself because I didn't want to be seen as different, which was already something I felt & I didn't want to be known as the girl with a rare disease as well. My Mum knew I had the condition as she was always with me at my hospital appointments but I very rarely engaged in conversation with her about it as I didn't want to acknowledge the matter. As the years passed, my rare health condition remained a secret & I'd be lying if I said the burden wasn't heavy at times. Carrying it around with me weighed me down & sometimes I wanted to share my worries, I wanted to tell someone that I was struggling to accept the diagnosis I'd been given, but I'd hidden it for so long that I didn't know how to open up about it. That doesn't mean Marfan syndrome wasn't a...

I'm finally getting around to writing this blog. I've been trying to plan it for a few weeks now but beca use I already wrote a blog based on my Marfan experience back in November, I didn't really know what to say. I don't want to bore you all by re peating everything lol. But now that Marfan Syndrome Awareness Month is here, I wanted to take the chance to bring up the subject again even if I don't have much to say, as anything is worth posting if it mentions Marfan Syndrome.  Up until last year, I 've always kept quiet about my Marfan Syndro me diagnosis because I was too embarrassed to admit that my chronic health problems were the result of a rare and serious disorder, I felt different enou gh as it was, and the thought of people knowing I had Marfan Syndrome made me feel ever more outcasted , so, apart from family, I never told anyone , which is why it was such a big deal to me when I finally started opening up.  My determination to speak out came fr...

It's blog time again! But this one's only going to be a short-ish one as I haven't done any planning. I've only just decided to do it as I thought it would be nice to talk about my day, so forgive me if it doesn't seem as well thought out as my blogs normally do. I've been quiet lately as Marfan Syndrome Awareness month is coming up, so I've been trying to focus on putting something together for that. For now though, I'll tell you about today.  This morning I went to church with my friend, she invited me along because she knows we share similar interests. Even though I have known her for a very long time, I was still nervous about going with her because I knew there'd be a lot of people there, (People are my biggest fear) & I always feel out of place in the middle of a crowd. But my friend made me feel less anxious by sitting with me at the back of the room out of the way of most people. I was worried about doing that in case I was seen as bein...

I t's blog time again guys! Al though I don't have much to say at the moment as my mind has been more focused on planning next month's blog because February is Marfan Syndrome Awareness Month. So I've been busy trying to draft something up for that, but I'm having to think hard as I already did a blog based on my personal Marfan story back in November, and I don't want to basi cally just repeat everything I said then. But at the same time..I also don't want to ignore the opportunity to raise awareness of something tha t I'm hugely affected by. So, I'm not making any promises, but I'm hoping to put something good (or at least publishable) togethe r for February lol.  That's not the only reason I've been qui et lately though . The fact that I've been in low spirits is also partly to blame as it has been impacting on my ability to concentrate on writing. But hopefully , by doing this blog & planning February's ..my motivatio...

I was diagnosed with Scoliosis when I was 13 years old. I clearly remember the day I had to go for an X-ray because I had been complaining of back pain, I waited a while then the consultant came to see me. I was with my Mum as he explained what was wrong, he told me I had an S shaped curve of the spine, called Scoliosis. He didn't tell me much more than that, apart from saying he'd refer me on to an orthopaedic surgeon. I went home that day not knowing what to think or feel, I was just a 13yr old girl who didn't understand any of this.  The day came when I had to see the Spinal Doctor & I went along with my Mum & Dad and had some more X-rays, then I saw the consultant who told us my curve had progressed since I saw the first doctor a couple of months earlier. He told me I actually had a double curve which was aggressive & would need operating on, he said it was strange to be so severe at my age, usually Scoliosis can be treated with a brace ...