I just found a blog this morning...

... and it was great. Click on the title of this post to go to her blog.

It is written by a 20 something who has been diagnosed with an Angioma, like me, and it is her take on her life, and how it has changed.

Hers is on her brain stem, just like me, and we have a name now (and I think it is so neat), "Stemmies".

Well anyway... as you can probably tell from my picture, I used to be heavily involved in politics. Not sure I mentioned it before, but it started in 2000, and it ended in about 2004/2005. Not very long you might say... but I was totally immersed in it. That is how I met my husband, and most of my friends. But it was done in my spare time...I have a full time job. That is another story.

So I was thinking... maybe I should use my knowledge, and limited connections, and bring these Angioma's to the fore front. You see there is a bill, #3684 or was a bill that was being introduced to the Senate Committee on Health, Education, Labor and Pensions, to fund a research center in New Mexico for a care center for Cavernous Angiomas.

Now for those that aren't familiar with Angiomas, do a Google search for "Ryan Westmoreland", or look at the blog I linked above. Or http://www.angiomaalliance.org/

In the mean time, I guess I will use this blog instead of just an on and off diary, that no one really reads or cares about... to a chronicle of my efforts to make my brain injury/neurological problem, better known, and not ignored out of convenience.

Angioma is not understood, it is often swept under the rug, and when you talk about it you get blank stares. That has been my experience. As much as I like my Neurosurgeon, and I think he is very good... to a certain extent, that is somewhat what my experience has been with him. The explanation from him and other Doctors has been, we just don't know what to do for you... (since mine is on my brain stem and inoperable).

Now I have sent my films and report to Dr. Spetzler in Az. at Barrow (that is where Ryan Westmoreland was, and Brett Michaels, albeit for a different problem), and Dr. Spetzlers office has called me to say that they can operate on me... I have given it some thought, and spoke to my Neurosurgeon about it.

The conclusion I came to was, at my age, with my charges (family, responsibilities, etc), that at this point my efforts and time would be best spent trying to make things better for those that come along behind me... Anybody who would like more of an explanation is free to ask for one.

So for now... I would like to do that. It is coming up on a new year, and that bill I spoke about earlier will be re-introduced. Well, introduced, since I think it was postponed before. It will probably have a different number. I live in Florida, and we have a freshman Senator coming up. I am going to keep my eyes open, maybe he will get on that committee, and maybe I will have someone to talk to about this. Or maybe I will have to do what I can in the mean time.

Stay Tuned to find out...