This post contains adult subject matter and is therefore not suitable for those under 18. Please don’t read on if you are under 18. NOTE however there are no pictures in it just text. Having #Marfan Syndrome, a hereditary genetic condition I have many issues to deal with. The immediately obvious ones are a) my […]Read more "Dating and disability."
All through my life I thought that it was normal to hear my heart beating and to feel every beat too. Apparently this is NOT normal however, go figure! Each beat my heartbeat is magnified as it is beating against my ribs and malformed sternum, pectus carinatum to give it the proper name, pigeon chest […]Read more "The heart .. I always thought .."
Really glad to be able to share with you that my daughter contacted me today. She is now home from hospital after heart surgery and is doing well. I have taken the blame for our recent ‘misunderstanding; so that we can hopefully move forward and try rebuild our relationship. I know we are both stubborn […]Read more "Contact! Finally I get a reply"
Having Marfan Syndrome the decision to have a child was hard enough, the risk of passing on this nasty genetic condition a real risk 50/50 in fact. Yet, despite my saying repeatedly I never wanted kids I did the right thing and took responsibility for that child when she came along. I tried to be […]Read more "A fathers failings …"
Finally I am pleased to share that my GP has FINALLY realised just how sick I actually am. It’s a shame it took him 7 years to actually read my medical records. He ought to have done so when I joined the practice but hey we got there in the end. He is now actually […]Read more "GP improvement in attitude"
As you are aware I am readying myself for my appeal to get the mobility element of Personal Independence Payment. Today I collected a letter from my GP who has FINALLY got it sorted. This has now helped him realise just how crap my health actually is. I don’t go pestering them like many others […]Read more "Something positive! .. Kind of …"
Last night my daughter announced to me by text that her cardio consultant was referring her for surgery on her ascending aortic aneurysm as it was now growing at a concerning rate and her increasing difficulties with exercise and the like were worrying them. Why then I am feeling guilty? My daughter is 23 and […]Read more "Guilt .. A Genetic Trauma."