My Story! Facts on dealing with Marfan Syndrome

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Hello and welcome to my Marfan Page

My name is Vicky and over the following months I shall share with you my experiences of living with Marfan Syndrome.

Follow me through my journey from discovering that Marfan syndrome even existed, how it affected myself and other members of my family and finally through me undergoing Aortic valve replacement and the road to recovery.

In time I hope to have created an educational and constructive site to enable all Marfan sufferers and their families to access the latest information on Marfan Syndrome, and share their thoughts and fears in our forum - so come on in - join the forum - ask all the questions you want.

Introduction

"Why won't you believe me?."

Its been a long road the last 3 years and one that doesn't seem to be reaching its end. I have coped with knowing that the illness that took my mother from me when I was 18 years of age is part of who I am. I have had to make major decisions early on in life to protect my health, like choosing not to have a baby. You may think gosh this must be an easy decision to make when it can affect your health. Believe me it is not, somehow I feel very much cheated, most of my cousins and family have children and for me not to have any I feel very much left out, like the leper of the family . I know that this makes no sense, and I know that my family think no less of me for not having children, in fact I know that they think I am very brave in everything that I have been through, but it doesn't help when you are constantly reminded of the fact that you have no children, family christening, parties etc etc. My choice not to have children, what a laugh. I feel that the decision has never actually been my choice, I feel that it was very much made up for me the day my mother died.

The last 2 years have been the worst ones in record with regards to my health. I can only hope that it is not a sign of things yet to come and that the road to recovery is now within my grasp – but I fear that I may only kidding myself.

Most days my back and shoulders ache, I can actually feel it entering into my bones, and my organs, spiralling its way through my whole system grasping hold of me and shouting with ferocity” here I am, and I am here to stay, you are not getting rid of me that easily with painkillers”. It is relentless, only fading slightly once I am drugged up to the hilt on my daily limit of tramadol and paracetamol, and then I feel like I am floating around the ceiling.

It isn’t funny floating around the ceiling feeling sick from all the drugs, knowing that you have to get dressed and go out. Not even to some where nice mind you but, to the relentless appointments at the doctors, the Anti Coagulant Clinic, the Gyni Clinic, ENT or the Heart unit. Every week, it seems like it’s the same routine.

When I do need to go out I find that is best if I endure the pain and not take the tramadol, otherwise, as I found out last week when a car nearly run me over, if I take the tramadol on top of the other tablets that I am on I cannot sense danger.

Even without the constant relentless pain that I now endure it hasn’t been easy getting to this point in my life. I am only 36 years of age and have already experienced so many things that most people never experience in a lifetime. Somehow I feel cheated, disappointed and mindful at all that life has thrown at me and at what is yet to come.

Don’t get me wrong I am not usually a depressive person; however I think that I may actually be going through a bout of depression as I feel very vulnerable and wary of everything and everyone. I find myself questioning everything. “Do I really need to do that”, “Do I really need to go there”, “Can it not wait I’m tired”. I think that I am trying to convince myself that things are ok when they are not and in doing so I am not facing up to what I have had to deal with especially within the last 3 years.

Hence, the reason for me writing this, both my father and husband feel that by me writing down my thoughts and fears that maybe, it will help me come to terms with everything and in turn that I may accept that I cannot always be in control of everything and that sometimes we all need to ask for a little help.

Ask for help, that's a joke, I have asked for help in the past and feel very much let down hence one of the reasons for the title to this story. "Why won't you believe me?." All will be explained....

to be continued..................
 

We control Marfan Syndrome - it does not control us!

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If you would like to share your story, air your thoughts or fears regarding Marfan Syndrome, or indeed if you just wish to ask a question, then please contact me at the email address below. I will be setting up a question and answer page shortly. All id's will be kept private.

 Enjoy - this site is for us all to learn, grow and understand Marfan more.    Help us to Help you....

 

ANY SUGGESTIONS OR LINKS THEN PLEASE EMAIL ME

VICKY EMAIL

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