Wednesday, September 2, 2009

Grinch Syndrome

I finally found the reason for all my health issues today. FINALLY! I found it quite ironic and am now convinced that the story of my life is documented in the story of How The Grinch Stole Christmas. My evidence is as follows:

"Every Who Down in Whoville Liked Christmas a lot…
But the Grinch, Who lived just north of Whoville, Did NOT!
The Grinch hated Christmas! The whole Christmas season!
Now, please don’t ask why. No one quite knows the reason.
It could be his head wasn’t screwed on just right.
It could be, perhaps, that his shoes were too tight.
But I think that the most likely reason of all,
May have been that his heart was two sizes too small."

So what exactly is Grinch Syndrome? If you think of a bell curve, the one we had to draw a zillion times in stats, 95% of the population fall within one standard divination from the mean of whatever is being measured. In this case it is the size of a normal persons heart. As long as your are with in one standard divination you are considered normal. However 2.5% have fall outside of TWO standard divination's, or in other words have hearts that are too big or too small. I have a heart that is two sizes too small. That is exactly how the doctor described it. It was originally called POTS, but fortunately the name is being changed to Grinch Syndrome. And I thought that doctors were not creative in naming things. If you don't know me very well, my nick name at home is Lulu after Cindy Lou Who (I was called Sarah Lou Who). That book has always been my favorite which is why it became my nick name. What are the odds?!?!

Me and my mother drove up to Dallas to see Dr. Levine who is the only person in the world that specializes in Grinch Syndrome. He rarely sees patients unless they are astronauts because they have gravity/blood pressure issues when they return to earth. I had to wait 6 months to see him and I was lucky to get that. I can't believe how lucky I was that the one person in the world lives in Texas...what are the odds!?!? So we spent 3 hours with Levine. He asked me a zillion questions and then he explained exactly why I have been having trouble with standing. Since my heart is too small it empties too fast and because my blood has a longer journey to get to my brain (because i am so tall) I lose my vision, become disoriented and get a head ache. I have learned to not let myself fall over and faint over the years, but the fact that I am tall is and forever will be my curse. I also can't stand still for more than 5 min without becoming extremely uncomfortable (light headed, sweating, heart racing, blood pressure falling, blood pooling at feet, nausea, etc.). So I am apparently a text book case. 90% of all cases are female and most of those are athletes. So since my heart is too small, the only cure is to make it bigger. They just finished a study that found that rowing increased the heart size of GS patients. I have to exercise everyday for at least an hour for the rest of my life in order to prevent the disabling effect GS has.

My doctor figured that swimming was the only reason why didn't end up as bad as it usually is. A little while ago they had a former professional ballerina come in in a wheel chair and couldn't stand up at all because it made her so sick. Any exercise that is upright will cause my downfall. The reason rowing is so beneficial is because it is done in a sitting position. I was given the option to start training again in swimming or rowing (along with a detailed weight training routine) and since I am not the biggest fan of swimming right now I chose rowing. So I shall become a rower. Fortunately Austin is the best place for it. I am so relieved to finally know what is wrong with me. I made a comment jokingly about being on an episode of mystery diagnosis, but the nurse looked at me seriously and said "that is a really good idea, so many people watch that show and so many with this problem go undiagnosed". So who knows, maybe I will become that famous person on that health channel show! Ha!

As for the rest of my life, school has started again. I only have two classes for fall, but I am glad its only two especially after seeing all the work that is involved in each. Getting a masters is crazy!! Don't do it unless you have the time. Fortunately I do. My dad has been in Russia for the past week and Andrea and Jameson have come to visit. My dad hasn't seen Jameson since X-mas and miraculously turned a potentially month long trip into a 10 day one and will be home in time for to see Jameson and celebrate his birthday on the 5th. Can it be that things are actually starting to work out? I had forgotten what it was like to have everything work out for a little while.