I Am Alive

I felt something last night. I felt normal. Really normal.

It was my twelfth seizure free day and I felt ALIVE, fully ALIVE. I have missed that feeling more than anything else, that ability to connect, to engage, to live. It came back last night - warm fuzzy feelings and compassion. Love. My brain was processing love.

In addition to my medication, I started a restricted low-carb diet on Friday, November 15th. I have not had a seizure since Sunday November 17th. I have only experienced a few visual illusions, small blue sparks - the kind that generally lead to pre-ictal fear and then simple complex, tonic and absence seizures. There is no fear. The sparks come. The sparks go. No seizures.

The first few days it felt like a coincidence. It had to be.

My life brought a great deal of stress that week and yet I had no seizures. Not one. My calendar remained blank.

By week two I was back on the treadmill. I feel compelled to exercise. I am not lying on the couch. I am not exhausted from seizures.

I ate turkey and a bit of green veggies on Thanksgiving. I did not miss the stuffing, the candied yams, the cranberry - they looked delicious but I did not miss the seizures.

On day twelve, yesterday, I felt compelled to add Yoga. My body and brain wanted to stretch and relax. I rolled out my pink Yoga mat. Calm. Balance. Breathe.

It is 6:30 AM and I feel alive, alive in a way I have not felt in a very long time. <3

Our New American Health Care System

IMPORTANT: Even though it is a PAIN to navigate the new federal healthcare system - having health insurance will change my life - it will save my life. 

I am an American woman living with uncontrolled seizures. I have Epilepsy and I am currently uninsurable. 

My life will change in January. Insurance will bring luxuries to my life including proper medical treatment, MRI and diagnostic tests and the ability to take life saving medication without fear of running out of prescriptions. It is going to be a beautiful brand new world for me. One day soon I will not live in fear of dying because I cannot access proper care; I will struggle, I will fight but I will live.

FYI: November is National Epilepsy Awareness month in the United States.

#aca #gopurple #epilepsy #ofa #obamacare

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Today you get to read my email response to a question floating around at work about healthcare.gov and our new American health care system. Yes, we get to discuss things like this at my job - pretty cool place. 

In response to those angered by the healthcare.gov website:

I liked this Reddit "Explain To Me Like I am Five" counterpoint to those who feel that the new system, specifically healthcare.gov, is a failure:

http://www.reddit.com/r/explainlikeimfive/comments/1owop4/eli5_how_did_healthcaregov_cost_634000000_that/ccwhsmv

However, even with government inefficiencies and bureaucracy calculated in -  I don't personally get it. We have a $100 Million Website linked to a $643 Million System that does not work. This must be fixed!

I am uninsured and live with Epilepsy - so of course I started the healthcare sign-up process on day one. My state requires using the federally generated healthcare.gov process. (Online sign up results will vary based on whether your state sets up its own service or not.) Most states use the federal system.

Federal system - for the first 30 days the system was unusable. It would not populate form fields. It would not save most information to the database. It would not recall information that it had saved.  

It took weeks for me to get a login to work. I don't mean it took weeks for me to fill out the application and verify my identity. No. It took weeks to just get the username/password to work. 

The system is still down more than it is up - I was on there Tuesday of last week. Too much traffic (at 2 AM?) - could not log in.  I try to log in a few times every week.

Identity verification process is broken for most applicants. it is better to call Experian and Healthcare.gov on the phone. Phone reps from both companies are excellent - great customer service. (Kudos: https://twitter.com/seizethediary/status/393877888132345858)

I am still waiting for my identity verification to process - the database "backlog" needs to be remedied - so when I (eventually) log in at healthcare.gov the database has my verification info on file. Once the database is fixed I should be able to choose a healthcare plan.

*/

RQ

Cognitive Seeds

It is after midnight. I am experiencing complex partial seizures, the first I have experienced at this level since increasing my dose of Keppra to 3,000 mg per day. My symptoms are typical of my previous complex partial seizures. I am experiencing a sense of derealization. I am a hostage to fear. I am falling down the rabbit hole.

A neural storm has scattered and shattered my emotions. Newly sprouted cognitive seeds give life to photonic phantoms which sprout and grow before my eyes.

 

The world is too fast, too loud.   A single point of time, a single memory, is creeping in on a wave of ictal fear. I am choking and drowning in experiential hallucinations.

My higher cognitive functions are totally fucked.

I am experiencing a single point of time. Not a second of time, not a snapshot, a single point. In essence, though, my temporal neocortex, perhaps more specifically my Amygdala, have turned this point into the inexplicable. It is EVERYTHING.  It is a universe onto itself. It is omnipresent and omnipotent. I am overwhelmed, engulfed, my brain has gone supernova and sucked me into a cognitive black hole.