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November 2012

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1st Solo Trip

Okay, so I only made it 1 block, then started to panic. I was slogging, and I couldn’t feel my right foot, leg, arm or hand and my heart started racing, and I wondered what would happen if I had a seizure (I’ve been feeling off), would anyone find me? How long would it take? I would end up in an ambulance all alone, in a hospital all alone, and I thought to myself, “Why am I pushing this?” Last surgery it took 5 months to be able to slog a 10k. I haven’t even walked alone yet and here I was on a journey around the lake which would require 45 minutes of running, door to door, at my pre-surgery pace. Sometimes I jump into things too quickly… Hey everyone, this is Dan and I have commandeered this blog from Jessica. I came home early today to find Jess in a less then desirable state. She was completely exhausted, stressed to the limit, and still trying to finish her blog. Although the parameters will need to be discussed, I feel it is necessary to institute  another technology blackout. Jess feels extremely guilty when she does not respond to texts and emails, or puts off blogging for too long. As with everything in her life she needs to be 100% in (or out in this case). If she is going to answer one email she will answer 100. She loves communicating with friends and family, and appreciates all the support, but sometimes her love for gab gets in the way of her healing. Jessica’s recovery is so vastly different from her first surgery that it can trick you into thinking she is farther along then she is. Because she is doing so well physically its hard for me to remember…

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Happy Thanksgiving

I hope everyone had a wonderful holiday! Dan and I hosted our brother and sister-in-law and their son. Christel and I cooked an entire thanksgiving meal (my first). It was hilarious! I never understood the necessity of timing for such a feast. Usually I’m with the boys watching football. I seriously deeply appreciate the women (and few men) who have cooked Holiday meals in the past. It truly is a logistical nightmare! Some things were a little cold, a couple of things were forgotten, and we might have over cooked the turkey, but it was also delicious! Thankfully none of us are picky 🙂 Now I’m relaxing at my parents house. I think it’s been around 6 months or so since I’ve been here, it tricky when you can’t drive and traveling alone isn’t an option. I’ve been excited to get here, but I was also very nervous. The movement and travel are exhausting. It kind of jumbled up my brain. It’s frustrating but I try to remember that I’m just over a month past brain surgery. I’m recovering well, but its also confusing. I look in the mirror and I think I look fine, but I don’t always feel fine. I still can’t leave the house alone. I can’t be in fluorescent lights or shopping centers, or anywhere too loud. My brain gets overwhelmed easily, yet refuses to nap. My right side has not improved, but I’m learning to work around it. It takes 5-10 attempts to put a glove on my right hand. It takes about 10 +/- minutes to put earrings in. I can finally put a bra on by myself (no more sports bras…yes!) – still it takes several attempts. I’m getting better at doing things that make me feel like a normal girl, but the…

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Two Irish Boys

I’m relaxing on the couch under my favorite faux fur throw. I truly do not even feel like I have anything wrong with me! Still got the numbness thing going on, and lack of dexterity in the hand, but shoot that’s nothing. I’m thrilled! I’ve already gone on several three mile even a couple of four mile walks with friends. In no time I’ll be jogging around the lake 🙂 I have to keep pushing the limits because I’m bored. Dan’s working 10 hours a day which takes him away from the home on average 13 hours a day, and now he’s working spans of 9 days in a row. I’M SO BORED. I am so grateful that Dan has a job, I remember the year and a half when he was out of work (which was perfect for nursing me to health from the first brain surgery). I feel dumb even saying anything. Maybe its because I’m jealous. I wish I could work. I can’t wait to wake up in the morning, be all sleepy and groggy and rushed, and get in traffic as I drive or ride the bus to work. I can’t wait to have co-workers, and office politics, and new friends, and hear about other people’s lives on a daily basis. It’s going to be so fun! So here’s the current deal, I am in talks with doctors at the German clinic to do the dendritic cell therapy. I have a phone consultation on Dec 4th. In the meantime, I’ve been trying to get all of my blood work, liver enzyme levels, and key information – like pathology, pre-surgery MRI report, surgery report, post-MRI report and such. Gotta call around to a few departments at UCLA, get the forms for them to release the documents, then…

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POW

Things have been steadily improving. I chose to slightly taper off my muscle relaxers, Tylenol and Aleve. My last pills were 48 hours ago. I am no longer on any type of medicine, and I’m telling you it feels GOOD! Here’s the story…. This surgery I had sutures instead of staples. Sutures are basically extremely tightly woven stitches. Mine was threaded through the skin with a very thick type of wire like material. The stitching was incredibly tight which I appreciate (it made for a very small scar), but as it was removed I could feel my scalp relax, and the pain increased into a deep throb. I’m convinced that the horrible pain was due to the sutures, then to the suture removal which caused a shift in the skin all over my head. After four days it started to get better, and then POW. Typically, sutures and staples are taken out at around 10 days or so after surgery. Because it was my second surgery, Dr Liau scheduled me for 25 days out. It makes sense, I can only imagine that each time they saw through my skull it becomes weakened. The incision is truly beautiful, half the width of the original scar (and only slightly longer). Before the surgery Dr Liau looked at my scar and asked me if when I get a small cut, does the scar pucker along the edges? I looked at her sideways and thought to myself, ‘Doesn’t everyone’s?’ Apparently not. It’s only like that for certain skin types. She’s so smart!! I can’t wait until I can compare the different scars from both surgeries. Hopefully Dan can take some pictures soon. Ok. I’m pooped. I have so much going on but it takes about 2-4 hours to do a post and although I…

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First Slog

Dan and I walked the whole lake today, 2.8 miles. Last week, Dan took me in a wheel chair. At that point I was only able to walk about 1/5 of the way. I’ve done a few different walks, small little ditties, but today I decided to get nuts. When I get frustrated, it fires me up. Dan took a video of my first little run (I thought he was taking a couple of pictures). I look like such a goober because I’m so exited. I figure if I’m fighting a headache I might as well take any break in pain and use it to my advantage! We drove down to the lake, grabbed a coffee, walked the lake – speaking dreams aloud, solving all of our problems and then completely inspired I decided to start slogging (jogging at the same speed of a slow walk). I didn’t go far, but it spurred my belief that maybe I can slog completely around lake by the end of the month! I need to get my heart rate going. It makes me feel alive. Today I felt more me like me in over a month. Dr Liau is truly a miracle maker. The recovery from the first surgery was massive, I’m looking forward to blowing this one out of the water!

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Snarky vs Snarky vs Snarky

I have been in bed….let’s see…going on six hours, with no sleep. There were two moments when I was almost asleep, then I heard a very loud *CRACK*, then later a series of cracks, coming from my skull, and both times I shouted, waking Dan. I am exhausted. I’m still taking pills every four hours. My circadian rhythm is all messed up. When I lay down my head makes crackling sounds which I’m very familiar with from the first brain surgery, but I don’t think I’ll ever get used to it. Not to mention the right side of my body is still mostly numb.(Sometimes it’ll tingle a little, the whole side, or just in specific locations.) It’s weird when you can feel none or 10% of your hand, or arm, or half of your bum, or your foot. Hard to get used to that feeling. It’s the feeling that I used to get just as I was having an aura – just before a seizure – that’s confusing. Now I’m constantly reminding myself, ‘this is just a continuous false alarm. Nothing to see here. Mentally move along.’ I’ve been off the anti-seizure medicine for a few days (5) and the hallucinations have not returned. My skin is clearing up as well, which is fantastic! I’m not as depressed, just completely exhausted. Even though I clearly need more pain medication to function (remember, I required the equivalent for a 300 lb person to function while at UCLA – double my weight.) I can not get anything until I can get into the Perioperative Pain Clinic at the UW, which is a maze of insanity. Call this doctor, call insurance, call the clinic, call to see if they received the fax, “it’s at the call center”, “call back Tuesday, Monday’s a holiday”….

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Mal Meds

My medications have been making crazy. For the past week I have been confused about what specific meds are causing problems. As my pills run out, it’s easier to pinpoint. I have been hallucinating, talking to myself and to imaginary people when I’m alone. Now that I’m back with Dan, he caught me in an episode, so he emailed Dr Liau. He also talked to her about the fact that my whole face is covered in painful blisters. I’m not fairing well, constantly in pain (no more pain meds), blisters all over my face – spreading across my body, hallucinations, serious depression, suicidal thoughts, it’s so awful. Dr Liau has me tapering off the anti-seizure medication early,thankfully. All we can hope for is to get back to normal, back to the happy place where I normally live. I am barely hanging on, at the end of my rope, feeling crazy, LITERALLY psychotic and very much in pain. Sorry to my friends, but I don’t want to see anyone. Please don’t stop by. I love you guys, but I’m not ready.

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Future

This little bird can now fly, her leash has been cut! I could have cut my hospital tag earlier but it felt like an accomplishment, a sweet victory.  I have not been awake more than two hour at a time today. Somehow, the exhaustion has finally caught up to me. It’s been tricky because in order to sleep I have to be sitting up and I can’t lean on anything against my head, it’s too painful, so it becomes a riddle, a challenge to figure out how to get comfortable. Happily, today I’ve become so exhausted that I will just rest my face down on my chest and pass out. I need as much sleep as I can so that I can make it through tomorrow. I should be home sometime around 9:30 pm or so. Of course I can’t wait to see Dan, to be home and cuddle my kitty, but I’m also nervous. Dan will be working 60 hour weeks and I’ll be managing myself. My parents have been cooking for me, helping bathe me, and taking care of all of my pills and such. I’m going to need to a system figured out for all the serious pills, eight times a day, reminding to eat, figuring out WHAT to eat, etc. I have a feeling I’ll be eating a lot of apples 🙂 Easy stuff. I just ordered vocabulary flash cards and a math work book from Amazon, it should arrive early next week. I figure I can spend a couple of hours each day freshening my brain 🙂 It sounds fun to me, I’m pretty excited. I know I’ll spend most of the next month on the couch or in bed, and I don’t want to be mentally bored. We’ll be looking into other treatment options…

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