We're Back!

Sorry it's taken so long to post. We're finally back home, and semi-settled. We're still waiting for UCLA to schedule the Dopa PET scan, and Functional MRI - apparently, my insurance is baulking. Eventually, I'm sure it will all work out, but in the meantime I'm excited to be home. I missed Bingie our cat (Emma's with Grandma Linda). 

I'm excited about the possibility of the vaccine, and hopeful for the future. My pill schedule had increased to 100 pills a day - that's too many! It has been exhausting, and very limiting.

I'm so exhausted that my brain feels slow.

The view from our home away from home, Dave & Sally's in Manhattan Beach

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My First Book

This weekend marks my first night by myself, and my first weekend since the surgeries. Because I've been unable to take my pills regularly (I'd either forget I'd taken my pill, or accidentally eat too many), I've been untrustworthy to be alone. Finally, with the help of my speech therapist, I put my pills in an organizer and low and behold I am responsible!

With my new found freedom, I'm being insanely lazy. On Thursday night I started off on the wrong foot by getting sucked into a marathon of the Real Housewives of New York, and almost lost it but I saved myself by turning off the TV and starting my first book. Normally I prefer non-fiction, or historical fiction (ie: Grapes of Wrath...I'm a sucker for Steinbeck). There's something consuming about a good book, that television just can't provide.

So here I've been for the past two days reading my first book. I'm pretty sure that I'm not really retaining anything, but on some level I'm telling myself that it's good practice for my brain, and it HAS to be better than television. Right now I'm reading a cheesy fiction story, about as mind numbing as it gets but it's really fun! It's like a Devil Wears Prada kinda book. I guess life is so serious sometimes you have to lighten up.

My day goes about like this.....
I wake up in the 5:00am hour and read for a couple hours, and take my medication, and then I go back to sleep. At around the 11:00am hour I make a pot of coffee and read some more, or continue working on my crossword puzzle (which I've been working on for three days...speaking of which, does anyone know what the heck "Mas that baa" that has four letters "e_es"). Then I head to sleep. I wake up in the early evening to read some more and then maybe watch some 20/20, or something like that. Last night it was the Natalie Holloway story, good God that is a horrible story! That Dutch kid is guilty in my book and he's evil. Yep, I'm passing judgment. And now, it looks like he killed that young woman in Peru. It blows my mind that there are such disgusting people in the world. I shouldn't watch that kind of night time TV before bedtime while home alone. Anyway, I read for a few more hours and then go to sleep. Not bad! Talk about relaxing.

Things will definitely change next week though. Finally I'll be able to drive again....YAY! I feel like a sixteen year old again! Starting this week I will be able to drive with a companion. I should clarify that I don't have to avoid driving alone, and in fact now that I've hit the six week mark I don't have to limit myself at all. I could go drive doughnuts around the Safeway parking lot if I wanted to, but I'm scared that I might hurt someone. I figure, if I can't hold a conversation when there's background noise because I lose my concentration, how the heck am I going to be safe in front of the wheel? For now I'm going to slowly practice driving and take pointers from my co-pilots. I figure Danny, my Mom & Dad will all know if I'm safe enough to drive alone or not. It's obviously better to be safe than sorry, and I would never forgive myself if I hurt someone else because I had a hankering for some peach sorbet.

All of this reading is exhausting, but it's also helping me sleep and recuperate. I get the feeling that my family and Danny will be pretty amazed at my language improvement over the weekend. They will see the improvement in my speech, and I'm excited for them to see the renewed depth of my speech. I've still been the same person, I've just been unable to get my point across the way that I want to. It's a long process of growth, but it's getting so much closer to me, the REAL me!

Little Leprechauns

I was just laying down for a nap, when it occurred to me that the pain around my head is from the fusing of nerve endings. At first, my whole left side of the head was numb (probably from the Oxycontin) and now it's slowly going back to normal. My left temple (where that jaw hinge is located) is tender to the touch and swollen, but the rest of my head is slowly gaining sensation. Hopefully my bite will come back to normal too. They had to sever some tendon on the left side of my jaw during surgery. It doesn't hurt, it's just a little inconvenient when I'm brushing my teeth and I have a harder time cleaning the roof and tongue because I can't get my toothbrush in there as easily. I'm now an open sandwich eater. I also have to act like a lady and cut things into bite sized pieces. No more jumbo burrito contests. Interesting that you'd have to unhinge the jaw, or that they would need to cut anything around my jaw. I wonder why they had to cut that area inside my head. I wish I had a video of my surgery. Huh.

I'm down to only two pills a day (a far cry from 42 pills a day), one at 8:00am and one at 8pm. It's only for preventing seizures. Yay! I'm still prescribed some heavy duty Tylenol but I try to avoid it as much as possible because I'm trying to clean out my system (my poor liver). I always thought wine would be my downfall, who would have thought it was going to be tumor cells. I honestly thought that my first ailment would be self inflicted. I thought I would have broken a bone, or maybe I'd get diagnosed with lung cancer from a couple of years of rebellion when I thought it was cool to smoke. I really never expected a tumor. All in all I've been a very healthy person. I'm a runner. I love vegetables. I take flax seed, fish oil, and spirulina. I was not expecting this. I guess you never do. At least I've done the best I can to always keep evolving. I continue to make healthier and healthier choices. I guess that's the best you can do.

Ugh. I'm exhausted. I was thinking about that fusing of nerve endings. I'll be laying in my bed sometimes and it will feel like pins and needles randomly on my head - not even close to the scar/scab. Sometimes I'll accidentally say out loud, "OUCH" - Danny looks at me like I'm crazy and then we laugh. It's almost like I've got little leprechauns driving the wheel in my head. I hate that saying, "This too shall pass" but I guess it's annoyingly true because that's all I can think about. This too shall pass.