Sorry I have not been posting this sooner but on Sunday night I got two e-mails from our beloved Dr. Soep and the wonderful news are that Connor's X-Rays were in the clear! No Compression Fractures to be seen :)
This is truly a huge relief to me as we are planning our trip to Germany in just one week and I did not want this hanging over our head. Plus if he had been showing Fractures in his Spine then we would have planned on traveling with his Wheel Chair. I looked into how it would have been treated and truly it would have come down to bed rest, possibly a brace and pain medications.
I was very sad to have missed the CureJM Conference in Baltimore this past weekend and I am happy to see on the CureJM Website and FB Page how much fun everyone had. I am hoping there were some news in regards to Research and to learn more about it in the coming weeks :)
I have been very busy trying to find information on how JDM is treated in and around Europe. I found a couple of promising write ups online that point towards very similar treatment options in Germany.
I have to tell you I am and always will be very saddened that there is no equality in treatments yet around the US and other countries. The fact that humans are not created equal or treated equal really lays heavy on my heart. I know I should let it go and be content with my place on this Earth but I just can't.
How can there be ways to make peoples lives easier or pain free, or even save life's in some Countries or States and not share this with everyone?
Why is a human life less worth if you are poor and not affluent with money?
Trust me I am NOT being critical about those that work hard and made a good living and are able to have luxuries as in vacationing, beautiful homes and cars. I am not envious to things that make your live more luxurious. All I want is equality in access to health care treatments. And if I am pushing to hard on this then I am even willing to limit it to our kids. Why punish a child who had no say so as to what family he was born into? Cancer, JDM, JA, Aids DOES NOT DISCRIMINATE ... so why do WE???
How I wish an answer to this!
So please please give me one if you have one ... I am not saying this in anger just in sadness as I really would love to know.
Hugs,
R A C A
This is truly a huge relief to me as we are planning our trip to Germany in just one week and I did not want this hanging over our head. Plus if he had been showing Fractures in his Spine then we would have planned on traveling with his Wheel Chair. I looked into how it would have been treated and truly it would have come down to bed rest, possibly a brace and pain medications.
I was very sad to have missed the CureJM Conference in Baltimore this past weekend and I am happy to see on the CureJM Website and FB Page how much fun everyone had. I am hoping there were some news in regards to Research and to learn more about it in the coming weeks :)
I have been very busy trying to find information on how JDM is treated in and around Europe. I found a couple of promising write ups online that point towards very similar treatment options in Germany.
I have to tell you I am and always will be very saddened that there is no equality in treatments yet around the US and other countries. The fact that humans are not created equal or treated equal really lays heavy on my heart. I know I should let it go and be content with my place on this Earth but I just can't.
How can there be ways to make peoples lives easier or pain free, or even save life's in some Countries or States and not share this with everyone?
Why is a human life less worth if you are poor and not affluent with money?
Trust me I am NOT being critical about those that work hard and made a good living and are able to have luxuries as in vacationing, beautiful homes and cars. I am not envious to things that make your live more luxurious. All I want is equality in access to health care treatments. And if I am pushing to hard on this then I am even willing to limit it to our kids. Why punish a child who had no say so as to what family he was born into? Cancer, JDM, JA, Aids DOES NOT DISCRIMINATE ... so why do WE???
How I wish an answer to this!
So please please give me one if you have one ... I am not saying this in anger just in sadness as I really would love to know.
Hugs,
R A C A
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