Saturday, July 28, 2012

We are SOOOO much more than our Genetics!

Hi Everyone,

I hope you are well and happy.

This time I am going to be blogging a little bit of anger!!!! Recently, I was asked to be part of a medical study. It was to trial 3 medication to see if it makes a difference to my aortic root dilation. I only have a mild dilation and do not need medication. But I was still asked. I asked what the side affects would be and basically, it is feeling 'letharic'. That is a terrible side affect for a full time working, single parent in a career of teaching 7 year olds. Anyway that is not where my anger comes from.

During my converation I was discssuing my son and about him being diagnosed with Classical EDS due to it being inherited from me. I also said that he had Pectus Excavatum. Very calmly he flippantly said "Oh that sounds like Marfan Syndrome!" I was absolutley floored and just shocked that he would say that with no compassion. He has never meet my son, he has never seen his medical history or anything to do with my son at all. He had never meet me either. To him I was probably just known as 'Trial Patient - 4.3cm dilated'.

I am sooooo incredibly wild at the medical bubble that we have to wait paitently in, for some of the 'Insensitive Medical Practioners' to make us better, to save our lives and to ensure us that we are going to be okay. Last year I went to see a Cardiologist who dropped this 'heart defect bomb' on me. She was so sterile that it sounded more like she was giving me a weather up date. I looked to her for a tiny bit of kindness, a tiny bit of reassurance that I was going to be okay. I said "After this I will be okay though won't I". She leant forward and said "I don't know what else you could die of!!!!!!!!!" I left feeling absolutley small, out of control and not even a person.

I have decided to leave the Public medical system and I am going to a private Cardiologist on Tuesday. I am going to be paying for the answers now, I will pay to see my aortic root dilation from my MRI scans, I am going to be paying for her to listen to me and I am going to be paying for her compassion.

Today I have handled ever single medical procedure I have been through, and so has my son, but I am now done with our lot. This is enough now, there is no more that my son and I can handle, we are done. We will handle EDS for the rest of our lives and we will be incredible spokespersons for this genetic condition, but Tristan will not Marfan Syndrome too, that is not okay. He has just under taken a humungus operation, he still has to have the all clear for his scoliosis and that is it now, that is all. You can mess with me, but you don't get to mess with my baby, he is hands off, he is sacred and we are done now.


Love Rowena XXXXXX