I saw a movie preview for the upcoming release of Extraordinary Measures.  Its a new movie with Brendan Frasier and Harrison Ford about a father who raises money for a researcher to finish his research in an effort to help cure his two dying children of an incurable disease.  On the trailer was the phrase: [...]

This has been home for us this week.  I have to say that the Cleveland Clinic foundation is breathtakingly beautiful.  When you pull up to the front drive it nearly takes your breath away.  I always thought that Cincinnati Children’s was a magical place… I had not KNOWN what it is to be in awe [...]

Well we are here in Cleveland and although the traffic is INSANE the drive wasn’t nearly as bad as we thought it would be.  Troy travels to Avon Lake which is only about 30-45 minutes west of here but somehow it seems like it takes forEVER to get there.  Maybe its just because we were [...]

This may be the 20th time I have written that title.  Maybe it needs its own category.  LOL  At any rate tomorrow is coming fast and I have been waiting for this for more than a month.  At the same time I wish I had more time.  It an ominous feeling to know that tomorrow [...]

Well today was the much anticipated visit with Dr. Berger (head of Neurology at UK) to discuss my brain issues.  I can honestly say it was a VERY good visit.  I had been pretty anxious going into this because I am trying to decide whether to go to Cleveland or not.  I have an appointment [...]

Another young person lost to Chiari.  Another life ended.  Another family with no mother, wife, sister, daughter.  Its days like today when its all too real.  Almost too real and too raw to deal with. Kelly Morrill Obituary You like to think that it will never happen to you.  That this is NOT what you [...]

When I talked to my neurologist about my PAIN that is what he had to offer me.  “Do you think you could be depressed?”  Really buddy… ya think?  I have NO idea what I have to be DEPRESSED about other than the fact that my brain is completely crapping out on me, I am locked [...]

So many people struggle daily with illnesses that alter their lives yet because you cannot SEE them they go right on through life with everyone expecting them to be “normal”.  My illness is literally “all in my head” and throughout the Chiari community you will find that the number one sentiment is frustration due to [...]

Tonight was the Art of Making Miracles for the Makenna Foundation.  I cannot tell you how much I enjoyed being there, doing what I do, enjoying the September air, the food, the company.  It was great.  I have only photographed one wedding since the ominous “diagnosis” and my meds were not titrated correctly yet so [...]

Well week 5 came and it went and Tuesday is my 6 week visit with my neurologist.  As I sit here I cannot feel my toes except for the knives and needles that seem to be invading them.  I went to slip on my shoes this morning and was sure that they were not going [...]