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Showing posts with the label miracle

You want to know real heartache?

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You want to know real heartache? I had to sign my child over to my parents when he was two years old and undergoing cancer treatment because I believed that was the only way to protect him from a system I no longer trusted. So please do not tell me that children are never separated from their families without serious failings by the parent. I have lived through a situation where disability itself was treated as a reason to question my ability to parent. There are also families of disabled children who have spent years trying to explain unexplained bruising, fractures or other symptoms before an underlying condition is finally identified. When professionals misunderstand disability or rare medical conditions, the consequences for families can be devastating. In some cases, by the time a diagnosis is reached, relationships and placements have already been profoundly affected. My son was, and is, incredibly precious to me. I became disabled during pregnancy and used a wheelchair, includin...

Well atleast I made it to being a mam! But...disabled for life too? It was all worth it!

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Well atleast I made it to being a Mam, but disabled for life too? It was all worth it. I found out what made my SPD develop so early and made it so severe, I am disabled with Hypermobility Syndrome, some prefer to spell it Hyper-mobility Syndrome. I am immobile and severely troubled with it, havin been rushed in ambulances the last 3-4 days too, and in ! and E 12+ hours... I am now on 240mg morphine and trying Lyrica/Pregabalin amongst lots of other pain relief tablets daily. Unfortunately there is no known cure for the syndrome and I will have it for life and it will only get worse. Atleast it is not life threatening and I made it as a Mam, my miracle son, conceived on Clomid, he is here, he is beautiful and I enjoy him everyday of my life and he is spoilt, played with sooo much and treat lots, always has lovely clothes and clean and cared for and I wouldnt have it any other way, he deserves the best treatment in the world and we take him to our local surestart centr...

Why are they allowed to speak to you like that?

Are people that work for benefits departments just trained to make you cry afterwards? This is not the first time I have experienced inappropriate comments and attitude when I have been on the phone even just enquiring about benefits, I just wish I had the guts and energy to stand up for myself to them... I find myself politely debating with them as opposed to actually saying, "well that is not for you to decide is it?" or even "I didn't phone you to take abuse or inappropriate comments, I phoned you for appropriate advice and help not your opinion." I phoned DLA to let them know my pain has gotten much worse to the extent going out in the wheelchair is now a problem and told them I am on Clexane, the lady I will only refer to as 'S' was extremely unhelpful. She said she can only put forward that I am on Clexane and not update my information in regards to my immobility and she was making comments like "I hope you are not relying on getting this bene...