October 2, 2013
I am busy. Busy is good. Busy means that my brain is working. Busy means that my seizures have been sporadic. I have not had a seizure since Sunday. Are you freaking kidding? I kid not. That's almost three days!! This is big time news for my stormy brain. Wootah! Ordering a #1 Brain coffee mug right after this post.
I am excited about the future. I am excited about the possibilities.
Here are a few things that are going my way this week:
Projects. Although I sometimes miss working in the "real world", working from home rewards me with interesting projects. I have a number of projects that I am currently working on - creative/technical/nerdy work - primarily paid but also some volunteer charity work. I work with people all over the world from the comfort of my home. Why yes, I do get to wear pajamas to important (phone conference) meetings.
Medication. UCB sent my adjusted refill of Keppra to my doctor. Well, not my current doctor, my old doctor, who is almost 2 hours from where I now live. I have to pick up the medication in person. That's a whole 'nother ball of wax. Breathe. Anyhow, I will have medication for the rest of the year! A small miracle for someone who is uninsured. Checkbox next to "one less thing to stress over". Checked.
Can't afford your AED medication? Have you looked into patient assistance programs? No this is not some clever advertisement hidden in my diary. Seriously, not having reliable access to AED medication has been my BIGGEST stress factor.
Check out this list from the Epilepsy Foundation: http://www.epilepsyfoundation.org/aboutepilepsy/treatment/medications/upload/Patient_Assistance_Programs_March-2013.pdf
I'm going to level with you here, it can be a tremendous pain in the ass and run-around to get doctors to agree to send in the paperwork. You will have to follow-up with everyone. You may have to make multiple in-person nagging appearances - if your seizures are uncontrolled, like me, you may have to bum a ride from a friend. You will spend hours and hours on hold. You will need to document and track everything. It can be stressful. These medications though, they don't just CHANGE our lives, they SAVE our lives. Be patient. Don't stress. Write in your own diary as you wait, yet again, on hold.
Relaxation. It's cooling off in my part of the world which means that, well, I can't help myself - it's baking season!!! Cooking and baking help me relax. They are simple pleasures. My absence seizures are extremely infrequent and my Simple and Complex Partials generally give me enough warning in advance for me to avoid chopping off a finger, so far anyhow. Sometimes you gotta live a little. I'll let you know if I lose a digit or get an oven brand in honor of the baking gods.
Wishing you a month filled with good cheer.