A Change of Pace...

Many of you don't know my status has changed as has the definition of lack of has changed in the past year...my life has also changed and probably for the better. My disease now appears genetic and not because of something I did or can fix unless they can correct my DNA...that's where we stand today and it could change but I finally think we are getting somewhere. Because of this I am being considered by the National Institute of Health (NIH) for a patient care program to help my 30+ docs get me on a program where my life will be normal. For the most part it is manageable now but there are circumstances that I prefer not to discuss...one could say it is like when you get the flu and are unable to be your best. Yet, the funny thing is, I have never been happier. I do still get frustrated and angry with all the judgment that has been thrown my way but as a whole I am happy with who I am and the plans for my future. I should hear in the coming weeks from the NIH as to when they will stat looking at me and my genetics for a solution to long-term care…kind like people with Crohn's disease or cancer or anything that comes and goes for someone.

Through my new network of advocates as well as myself I am continuing my advocacy work and hoping to get part-time gigs writing and doing media relations, strategic planning, etc. from home or office. I am also starting to write again as well as some of the other projects that were put on hold for so long due to the surgeries and stuff. I have several people interested in my story as well as that of those I am working with in the advocacy world.

Also, I plan to write entries here to help other understand as caregivers what a chronic illness is like for a person and places where they can go for help...if you know of charities which help people with long-term illnesses please forward them to me as this is a new section on my site. I will be starting my own foundation once I get funding to pay the applications fees....you would think when one wants to help others they would let you apply for free. I have a few volunteers but can always use more. Which brings me to my media efforts; several media outlets have asked me to write inspirational articles and I would welcome any leads on chronic illness stories. Since I now have an extended network of fellow advocates who can probably fill any journalists’ needs we are becoming an excellent resource for public relations professionals and media outlets.

Anyway, you get the gist for now. I hope you will visit in good faith and not in judgment since chronic illnesses are not anyone’s fault. Because you don't understand something does not mean that it is not real...kinda like not understanding someone's lifestyle choice since it differs from yours. We are all different and the people I work with just happen to have a long-term illness and happen to be fighters just like me!

I will fight till the end and will always work to help others who are sick!