Wednesday, April 22, 2009

Just around the river bend

Hello Friends and Family,

I am typing this blog in green because I am hoping for a new beginning in my life.
Since the last time I wrote anything, a lot has happened. I will just spill it outright. This upcoming Saturday the 25th, my Mom and I are flying to the Rochester Minnesota Mayo clinic to find out exactly what has been going on for the past several years, and hopefully give it a name, and an identity. I do still believe there is on very pivotal driving force behind all of these symptoms. I am hoping and praying that Rochester Mayo clinic can give me the answer I think I already know. The process for getting into the Minn. Mayo was a relatively short one (contrary to the usual practise of a 'waiting list'). It started with me E-mailing the clinic in Arizona, and within 48 hours they referred me to the clinic in Minnesota, mainly because the Minnesota mayo clinic has more of a knowledge base for Kartagener's Syndrome (The genetic defect that started it all). It took about a 3 weeks to gather medical information, but upon faxing that information to Minnesota on a Thursday, they contacted me on the following Monday and set up an appointment for about 2 weeks later. I was very pleased that my 3 month waiting list time got upgraded to about a 6 week one. I am hopeful that I will be able to find the answer I seek, and get the assistance I need. Mine is a rare, "fascinating" case that the Minn. clinic is eager to learn more about, and try to help me with. As it is, there are not that many documented cases of those with the FULL syndrome. I am one of those cases, and hope to be able to get more information out there about this Syndrome, so others who suffer from it, or know someone who does, can obtain MORE information on how to have a better circumstance while they are in this existence. Out of my own suffering, I hope to possibly ease some of that for someone, anyone else. It has been one miracle after the other getting me to this point, so I know I am being watched over and prayed for. Thank you, ALL of you who read this and offer good thoughts and prayers in my behalf. I hope to be able to update this as I am there at the clinic, but I can't really promise anything because I don't really know what to expect.
Because there are so many problems that are so complex, they are starting me off with internal medicine. I think the doctors might have a bit of "fun" studying the "situs inversus" kid that functions sort of....like a normal human being (but not near as well as I used to). At this point, I am just glad to be considered at all (do I sound like the typical cliche 'it's an honor just to be nominated' ? LOL). I am excited, but admittedly a little afraid of this unknown territory. My Mom is going with me, so it can't be ALL bad, now can it???? Here's to the discovery of a new beginning!!!

1 comment:

Kindra said...

Hey... how did your appt go?