On The Up & Up

Things are getting better, I just have to get out of my head. I'm not sure if that makes sense. The seizure issue, for me personally, is a mind game. I can easily work myself up into a very fearful state, or I can calmly remind myself that I'm doing fine, that I'm just overheated, maybe it's very sunny, that my heart rate is up because of the conditions, not because I'm about to have a seizure.

I'm getting to the point where I feel "normal" and much more strong physically, and mentally. I still have fear, but Dan and I have been working on pushing my limits. I went for a walk with my friend Lauren the other day, Dan and I made it to PCC and Home Depot (both driving), and Dan and I have even gone running a couple of times. It might sound silly, but each time I'm out of the house is a major success. I'm excited to try and get out of the house on my own. I bet the first time I do anything will be a run around the neighborhood. So far, running has been my rock. It removes anxiety, gives me strength physically, and emotionally. It puts me back to my roots, grounds me, and empowers me. The florescent lights of the real world, the sirens and traffic, all give me (and probably a lot of people) anxiety, but when I'm out breathing fresh air, eying the various plants, birds, random pets, and vibrant people out there, I always end up smiling and feeling human, alive, happy, and grateful. I should clarify, normally, when I don't have seizure activity I am absolutely fine with sounds, bright lights, hectic situations or life in general, but when I'm on overload I have to be really careful.

Thank you for your patience as I've been horrible about emailing people back, and posting on the blog. I've definitely had a lot on my mind, not just with the attack, the landlords, and seizure stuff, I'm also incredibly nervous about the future brain surgery. The first brain surgery was not an option so I felt like I could just accept my fate, and release all (or most) of my fear. This time, this brain surgery, is optional. That is intense! What if something goes horribly wrong? It would be my fault for subjecting myself. Dan emailed Dr. Liau to see if she would prefer that I get on anti-seizure medicine for the surgery. I hated taking it last year, but if it will eliminate a complication, I will do it. I will do anything in my power to eliminate all complications. I want to get in tip-top shape, create a cancer fighting, surgery healing machine. My goal is to be running 3-4 days a week, weight lifting 2-3 days a week, and doing yoga 2-3 times a week for at least a month before surgery. It might sound excessive, but I'm not as intense in the workouts as you might imagine :) It's mostly a stress reliever, and the more you work out the more fun food you can eat :)

I've added delicious food to our diet, lots of legumes, whole grains and of course the usual veggies and lean meats. The difference, is that I'm playing around with new recipes. Tomorrow night I'm making a spinach burrito. It includes sauteed spinach, onion, and bell pepper then of course, a mix between black and pinto beans (seasoned with hot sauce), then long grain black rice (seasoned with cumin & a little turmeric), with chopped green onions, chopped romaine lettuce, and shredded sheep cheese - you wrap it all up in a whole grain tortilla and it's DELICIOUS. And it's much more fun than the typical salad and steamed/grilled veggies that I usually make us. With all of the stress in our lives right now, I'm enjoying the relaxation of food rules. Life, literally, is too short to get crazy about maximizing the nutrient content. Keeping everything in the whole foods, or whole ingredient, category is good enough for me these days. So what if a whole grain tortilla is technically processed. I'm over it. It's still whole grain (of course, you still have to read the ingredients to make sure there's nothing funky), sprouted spelt tortillas are my fav. Some may disagree, but I do believe that there are some processed foods that aren't that bad for you.

Photo of the day taken last Friday...I have a new buddy, and I keep feeding him which is strengthening our bond....

Attack Followout

I've been depressed and I'm embarrassed to talk about it. In fact, I've been avoiding the topic, hoping it would just get better - but it isn't getting better. In fact it's getting worse. It's not like every moment of every day is horrible, but I feel trapped. I've become agoraphobic due to the auras and seizure. I'm afraid of getting too hot, becoming too stressed, getting stuck where it's too bright, too noisy, too many people, too intense of questions, of hearing a Romanian accent, the speed of moving vehicles, the list goes on. I know I sound ridiculous, and I'm disgusted with myself, but I'm just completely overwhelmed. I worked my way up to Eric and Laura's wedding, resting the week before, mentally preparing myself. I really, really wanted to go the wedding, and I was nervous, but I made it. Originally, I felt like it might be too much, and I asked Danny to go without me, but he refused. He didn't want to leave me. So, I pushed through to make sure I could make it. I didn't want to be the reason why Dan wasn't able to attend his best friend's wedding. Everything worked out fine, we had a WONDERFUL time, but now, getting back to life with the move and everything, it's tough. 

It's incredibly hard to understand the waves of dizziness, of the overheating and physical dynamics that happen when my body is stressed. It can come in an instant, when you're least expecting.

I'm terrified to leave the house. I've tried getting to the store, or for a walk or two - always with Dan, but I feel unsafe getting very far away from our home. We've had to cut our outings short, or the fear overcomes me as we're just leaving and I stay home while Dan runs errands. I wish I could explain how it feels. It's a combination of getting nauseous, feeling like your body is melting from the inside out, internally combusting. Imagine a wax figure melting down, that's how my body physically feels when I'm having an aura or seizure, or that I'm a robot that has been sprayed with water, that I'm short circuiting. 

I'm working all of these issues with my therapist, and I actually have homework - I'm supposed to get out of the house every day. There's different specific tasks, but it's too much. Even before this attack I still didn't leave the house every single day, I was too tired. The homework alone from counseling is more exhausting that I normally have to deal with. 

I feel trapped, fearful, exhausted, scared, distrustful of my body, and incredibly sad. If you've never had a seizure or an aura, I don't know how to explain it accurately. It's horrible.

At this point, I only leave the house with Dan or someone from my family. I'm afraid to try and get out and then have a seizure out on a random street as I walk. I'm terrified to not be able to call for help. I'm terrified to push it and make things worse. I had no idea that this attack would hurt me so badly, that it could effect me this much. That it would immobilize me, imprison me, and completely ruin my quality of life.

Theoretically, I know I will get better, but my soul and my heart are hurting. Sometimes, this journey is harder than I expect. 

Thank you for the birthday wishes yesterday. I am officially 32. All day I thought about when Dan turned 32. A month later, I was diagnosed with my tumor. Poor guy. He didn't exactly have the best 32nd year. Although mine is getting off to a rocky start, I'm hoping it will just get better and better. 

It was a beautiful day, and I was able to fill it with wonderfully happy things like weeding in our little garden, painting a little mirror, unpacking the bedroom, doing laundry, painting a wall, visiting with Meghan, and watching the Olympics. I did more in a day than I would usually do in a week. It was fabulous, but I'm worn down. Perhaps that's why I feel so sad. That, or the fact that I'm dealing with quite a bit. Hard to say. 

Birthday flowers from Meghan