Lu's News

When I first received my Marfan Syndrome diagnosis many years ago, I felt like I had been given a death sentence. No word of a lie, I thought the Doctor was trying to tell me I was about to die. Panic was rising within me and shock waves ran through my body as she said the words Life Threatening Disease . My feelings have changed a bit since then, and I no longer want to punch the Doctor in the face, but at the time that was exactly what I wanted to do, because I was a furiously angry teenager who was literally just getting over spinal surgery and the last thing I wanted to hear was that I had another terrible health problem to contend with. I’d already felt isolated for the last few years due to the health problems I'd endured throughout my childhood, and now here I was again, sitting in front of the Consultant being made to feel even more abnormal as she told me I was the victim of a rare and serious "disease"  I vaguely remember storming out of the clinic that day ...

It's been two days since my last Cardiology appointment & I'm still thinking it over. I haven't discussed it with anyone, but it's been on my mind a lot. I was there for my regular check up and I was given the results of my last echo. The Doctor said it looked reassuring overall, but my aorta has stretched ever so slightly. I felt the panic rising within me and I started to sweat as I listened to his words. I must be hearing this wrong. My heart has to be OK. I had to gather myself back together quickly so I could take everything in. He was telling me the stretch to my aorta was very, very slight & was not a cause for concern right now, as long as I carry on being closely monitored. But I was not expecting this. I expected to be told my heart was perfect like all the other times, but this time was different & I was worried now. I didn't know how to feel when I left the clinic. I was truly happy that the Doctor thought it was nothing to fret about at ...

It took a lot of courage for me to tell my Doctor I'd been living with and suffering from depression. I had kept quiet about it for so long but eventually I found the bravery to ask for help. I thought it would make me feel better but instead I came away after the appointment feeling disappointed. My effort had been a waster of time as my Doctor had shown little concern. He told me to refer myself to a councellor & said I might be on a waiting list for up to 3 months. He told me there was nothing else he could do & I got the feeling I hadn't been taken seriously. I wasn't happy but I had to accept it.  I came home & phoned the referral line straightaway and they put me on the waiting list. All I could do was hope I'd receive an appointment quickly but unfortunetly for me my referral didn't come through for another six months. SIX months! I had spent all that time feeling let down & forgotten about and I couldn't even go back to my Doctor as he...

This blog is an unexpected one really as I've never planned on sharing my scar on blogger before, but when I looked back at the full length photograph of my scar that my Mum had taken, I realised what an eye-catching photo it was and thought it would be an interesting topic to discuss. So here I am, showing off my 14 inch spinal scar that I've had since I was 13 years old due to needing a spinal fusion to correct an aggressive double curve. As you can see, I was cut open from my neck to my waist but luckily I was left with a very neat scar. The protruding hardware that you can see poking it's way through my skin is more noticable than the actual scar and that's because the bolts & screws are looser than they should be, but that can't be altered now.  I've never shared my scar publicly before because it's not really seen as a popular thing to do, but I don't care. I'm not a follower and I won't keep it hidden to please others. I will show ...

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...