Tuesday, August 19, 2008

Catching Up

It has been awhile and a lot has happened so I am going to try to play catch up. Last Tuesday night I was watching TV and saw this medical mysteries show on TLC (love TLC!) and the first one I nailed within five minutes. It was Hashimoto's Thyroiditis. I recognized the symptoms instantly so my curiosity was peaked. There are two diagnoses per episode. The next was headache related. Turned out the lady had a CSF leak. Well, as we all know, CSF leak is a complication of PFD. She had been diagnosed with chronic sinusitis due to the pressure she was describing and the clear fluid that continually dripped out her nostrils which her doctor had assumed was post nasal drip. Turned out to be spinal fluid. (I had had post nasal drip for a few days and terrible sinus pressure. The antibiotics that I had been prescribed for sinusitis weren't working.) The headache she described was just like the ones I have been having. HMMMM. Then, when it was over, I turned the TV to a medical mysteries show on prime-time. They featured a story that, once again, I got within about 1-2 minutes. The guy had Chiari. I don't know about you, but I believe in God's intervention. Maybe I was meant to see these shows. Or maybe I am reading way too much into them.

My husband works two jobs and came home from job #2 around 11:00pm. I told him about the shows and that I was pretty much convinced that I had a CSF leak. My headache was almost unbearable and no amount of pain reliever was working. So hubby took me to a hospital an hour away to have me checked out. I had an awsome doctor. He wasn't dead behind the eyes like most. He seemed genuinely interested in what I was saying. (A part of me wonders if he would have been like every other doctor I encountered before surgery if I hadn't had brain surgery. Maybe now I am more interested and have a scar to back up my story of pain and illness. Maybe now I am more believable.) He ran a CT scan just to be sure. The scan came back fine. He said he couldn't rule out CSF leak but nothing major was going on and there was nothing to indicate my head would blow up in the near future. He gave me two Vicodin (however the heck you spell it) and told me to make an appointment with Dr. Di which I did the next morning. The amazing thing is that the Vicodin worked. So now I am wondering if maybe I had a rebound headache and I needed something new in my pain relief arsenal.

I have had one migraine since and am currently pain free. My sinus' are currently draining and I am feeling much better. Maybe the antibiotics just needed longer to work than I gave them. I cancelled Di. I have to go for my three month MRI and check in a month anyway. I had a legitimate concern so I am not ashamed like I used to be when I thought that I was just a hypochondriac psychotic mess (I would like to thank all the medical jackasses that convinced me this was true). I am feeling better now and that is all that matters.

My hubby and I are planning a romantic weekend getaway. He has worked 2-3 jobs for over a year now and I have been ill for a decade. We need quality time without kids! We are going to the last place that I can remember truly being relaxed and happy. We are going to Chicago, to the Navy Pier. We are going to take a boat ride on Lake Michigan. I want to make it a dinner cruise. They have fireworks every Saturday off the pier set to music. I love fireworks! We are going to stay at the hotel we stayed at last time we were there. It was gorgeous and has a delicious Irish Pub inside. Then on Sunday, we are planning on going to the Field Museum in Chicago. They have wonderful exhibits, from ancient Egypt to ancient man to ancient Earth. This is my kind of relaxation. I feel incredibly guilty (when do I not, I live in guilt) about not taking the kids to the museum. Hubby keeps trying to convince me that we need this alone time and the kids are fine. They would probably ruin it for me anyway. They would whine and complain about five minutes into it and I would feel rushed and stressed. I took them to the Atlanta aquarium last year on our way to Florida. I had read that they had a couple of Whale Sharks and I thought it would be so cool to see them up close. The kids hated it. They bitched the entire time about how boring it was and could we leave yet. It was really hard to enjoy myself and eventually we left frustrated and stressed out and it was such a disappointment. My dream is to go to Alaska and see the whales but I struggle with bringing the kids. I am leaning very heavily towards not. This is my dream! They would just ruin it for me and that would be a life long disappointment. I just wish they could enjoy themselves and marvel at nature the way I do. But they're kids and they're genetically engineered to be ungrateful. Is it selfish to leave them behind? Here comes the guilt. :(

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.
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