Saturday, August 9, 2008

AHHHHH!! Relief!!

Hi all! Well I am feeling pretty fantastic. The steroids did their thing and some antibiotics (two to be exact) fought off some nasty infections caused by the steroids wrecking my immune system. I woke up this morning and BAM, I'm back baby! So nice. One of the infections was a sinus infection. I used to get most of my Chiari headaches in my face around my eyes so I at first thought that it was just the meningitis, which mimics Chiari, causing all the excruciating pressure. Then the pressure shifted to my cheekbones and upper teeth and I knew something was up. I honestly don't even know if I needed the second round of steroids, it could have been just an infection from the first round. Who knows and who cares. I am so happy that it is over.

I have had so many ask how I am and I want to say thank you. You are all so wonderfully sweet. It is so nice to know that someone is thinking of you and actually cares how you are. I spent 10 years in absolute misery from the pain and anxiety from the unknown. "What is wrong with me?" "Am I going to die from this before anyone can tell me what it is?" "Are the doctors right? Am I just mentally ill? Is this illness somatic?" I went to so many for help and the closest they came to caring was pity and those were the nice doctors. It just means so much that people can hear me now. People are listening now.

Speaking of listening, funny story.... I went to Urgent care because my doc was closed and I couldn't take the pressure in my face anymore and I was pretty sure I knew what it was now (sinus infection). So, I'm in there and the doc comes in and he's like 78 years old and probably went to medical school in a covered wagon. He starts asking questions about all my meds. He asks why I am on the Prednisone and I tell him Aseptic Meningitis. He asks who prescribed it and I tell him the Cleveland Clinic. He asks me why and I tell him I had a Posterior Fossa Decompression with a Laminectomy because of ACM1. He looked up over his glasses at me and questioned only the Laminectomy part then he asked me to touch my chin to my chest which I informed him I was told not to do. He asked who told me that and I told him my NS. He shut up and sat back down to write on my chart. He asked again why I had brain surgery and I told him, again, that I had ACM1 (even said the full name to help him out). It took him about 6 times to just write the ACM1 abbreviation. Basically, I think he just gave up trying to write and understand and just gave me the antibiotic without a fight. My hubby said he probably didn't want to mess with me since I knew more than him and I was saying big words. I guess to preface this story I should have said that I have seen this man a few times before in the past and he always fights me on everything. It is nice to be the smartest person in the room! ;)

God Bless!! I hope all have a pain free day.


Chiari Mama said...

Hello come join us at message board . GREAT people and good support .

Christine from WI said...

I have just read your riveting story from beginning to end. I am so inspired by your amazing attitude!! I had never heard of Endoscopic Decompression before. Thank you for sharing your story and letting people know about this option! I have Chiari - and a blog - which is more of a resource library of links to information than a journal. I have an entry about interesting Chiari blogs and will be adding a link to yours shortly. I will be keeping you in my good thoughts and prayers! Keep up with the good work with your blog!! :^)

Lori said...

Thanks guys! I appreciate the feed back. Thank you Chiari Mama for the invite, I just might do that. I do belong to WACMA but haven't been on ASAP. I had just recently heard of it though.

Thank you Christine for your kind words. I will check out your blog and would love if you would add me as a resource. That is the whole reason that I do this. When I started, there was little to no information on Endoscopic Decompression. I went into it pretty much blind. Most Chiarians do not know this option exists. Let the word be heard! I will keep you in my thoughts and prayers as well.

God bless you both!

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