Where to begin. I have been very down in Spirit. Tired, and feeling like crap with the infamous Histio...Then tired of feeling tired. The goal of controlling my blood sugar levels is coming along nicely, so my fighting Spirit is back in full force.
I am more determined than ever to kick this crap in the butt!! One thing that is helping to keep me in focus is the fact that the more Adults that can participate in The Clinical Study the better. It is having a profound affect on two of the ladies that have been on it for a couple months now. One is actually back working at a new job..you go Whitney!!
That will result in allowing babies and children to take this medication also. That is the ultimate goal for me personally. I have the disease, and of course I want selfish and I want to live longer, but I really hate reading on Facebook that another one of the children has passed. I don't want anymore Babies to die because this Disease is so rare there has never been a lot of reasearch due to lack of funding and awareness.
In this day and age, we have the capability of networking and sharing information with millions of people globally. And that is my/our goal. There are some very talented, gifted, and very determined people working continuously to promote our cause.
Liam's Lighthouse Foundation, The Histiocytosis Assoc. are a few that are growing as each day goes by. Together, we are posting on our walls, in our blogs, and on any website we can find to help these organizations. So, I am giving myself a Pep Talk to stop feeling sorry for myself and get motivated!! Go Sue!! LOL!!
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