Wednesday, February 20, 2013

Feb. 13, 2013

Today is 3 weeks since surgery. I can't believe how far I've come in this short time. I still see such great improvement in symptoms. I've yet to have a totally narcotic free day. I thought I would make it yesterday, then I was blasted with a horrible headache late afternoon....then some new and not so fun muscle spasms in my neck.  I try to not get frustrated. Being home alone for such long periods of time gives me so much (maybe too much) time to think. 

The enlarged lymph node hasn't really gotten any smaller in the past few days, however, it's no bigger and hopefully by the end of the 10 days it will be completely gone.

Dr. Kim said the usual time for complications is between weeks 2 and 4. He further said to call him if my headaches worsen. I woke up with a headache this morning...a real headache..and it's lingering. I am trying to pray these headaches away. As vain as it sounds, I'm afraid of being put on steroids...which is what he told me would happen if I began having headache recurrence.  I am getting married 2 months from today..and don't want to be puffy from steroids.  I know...vain, vain, vain. Hey, at least I'm honest.

I'm excited that I may possibly get to meet another of my Chiari friends next week. I referred her to Dr. Kim so she is driving down to Houston from Oklahoma this coming Tuesday.  Her name is Tonya. She has suffered for along time..and is ready to give up. Add her to your prayer list if you don't mind.

This whole journey has me so perplexed. I am trying to determine how to best help other people like myself. There is no need for the suffering so many go through just to find help. How do I advocate for these people? I've looked into starting a non-profit organization and am trying to grasp what all that entails. I have a Facebook page dedicated to Chiari called The Constricted Cranium, as well as a blog by the same name: -that I'm using to  promote awareness..I just feel like there is more I could be doing or should be doing. At least I want to do more. I don't I said, I think too much these days and frankly, it makes my head hurt more. How does one just not think? If you have a method, please let me know!

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