Enter October

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
• Medication
• Relaxation

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.

RQ

Friggatriskaidekaphobia

Happy Friday the 13th!

Some of my fondest memories are from Friday the 13ths. The day we moved into a new house. The day my brother wrote FUCK in the neighbors wet driveway cement. The day my local Payless Shoes store manager called ME on the phone one boring afternoon in 1981 to tell me I had won FREE shoes for my amazing coloring contest entry! Yessss! I rocked that clown coloring page. I tossed and turned all night thinking about my shoe prize.

Frig. I did not fall asleep until 3:00 AM last night.  Same story. Different day. I take Keppra in the morning and six or so hours later I begin to feel the stab of pain in my right temporal lobe; I feel the cold slowly crawl down my limbs. I wait at least eight hours until I take the next dose. On a good day I will only have multiple Simple Partial Seizures (SPS) between doses. I do not keep track of every SPS but try to track every Complex Partial seizure.

Suck it September.

September has not been a good month. I have had Complex Partial Seizures and Tonic Seizures almost every day. Complex Partial Seizures are freaky because I do not remember moments of time, I feel them creep up and garble my ability to communicate - sometimes I become highly irritable and communicate irrationally - sometimes I just stare bug-eyed into space and become non-responsive. Tonic seizures are weird because although I maintain conscious ability my body becomes contorted. I like to imagine that I curl up coolfully though - striking Count Orlok's Nosferatu poses like good ol' Max Schreck circa 1922.

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Read more from RQ at www.seizethediary.com