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Showing posts from 2017

Unexpected Concern

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

180 Untheraputic Minutes Of Therapy....

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&

Every Scar Tells a Story

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

Bouncing My Way Back..

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

A Never Ending List..

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

Living With An Untold Diagnosis

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

MARFAN SYNDROME AWARENESS MONTH

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

Facing a Fear

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

Just a Short Post To Keep Everyone Updated

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

From Scoliosis To Marfan Syndrome

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 &a

A Short Explanation... x

If you read my last blog you will know that I've now decided to remove my Facebook blog page. A few people have asked why I'm doing this so I thought I would do another blog to explain my reasons more clearly. I don't think people understand my decision to delete it so soon after I set it up. But hopefully I will be able to gi ve a better explanation here.  I didn't consider anything other than making things simpler to begin with. But as time went on I started looking at it like this.. I could keep sharing my posts on the page, but I'd have to edit what I was writing about because I didn't want what ever it was to be read by everyone on Facebook, or I could delete the page & go back to blogging in the honest & open way that I did before.  By sharing my blogs on the page I felt like I had to think more carefully before writing them . I had to question weather I was happy for people to be able to visit a facebook page & find out so much about me,

Read About My Decision To Delete My Facebook Blog Page... x

This time I want to talk about my Facebook Blog Page & why I've decided to delete it. I made the page a few weeks before Christmas & have been using it to share my blog posts on. It wasn't something I always intended to do though but the idea came after people where asking me if they could read my blogs, which meant I was having to share the links around in seperate places, which I didn't mind. But I thought it might make things simpler if people could read everything all in one place. And also, I guess I just thought it was normal to create a Facebook page for my blogs as it's something that most bloggers do. I made the decision to set up a page based on those 2 things but I didn't take into consideration how I would feel about hundreds of people reading my personal business on Facebook. I started questioning weather I was comfortable with that but I tried to stick with it in the hope that I might get used to the idea, but something in my mind can't ada

Raw Honesty (I Can't Believe I'm Posting This)

I am not sure if I will publish this blog once it's finished, I'm only writing it to get a lot of things off my chest and some of those things aren't going to be pleasant. I don't know if I am brave enough to let people read my rawest feelings, especially my family members as I know they like to read my posts. But if you're reading this now then it means I have braved it. Please don't feel sorry for me or anything of that sort, I'm not doing it for that. I just needed to completely offload in a way that I have never done before. I try to always be honest about how I'm feeling when I write my blogs, and I have been so far, everything I've wrote has always been the truth, but I've edited it slightly to make it sound less harsh, I've held back a little because being completely honest about my feelings might upset & worry those close to me, which is the last thing I want. But I need to remember why I took up blogging.. To let out my darkest &