I entered a writing competition yesterday on Instagram and Twitter with #SixWordMemoir Theme: The Six-Word Spoiler Of Your Life

My entry includes the photo of this post: “SPOILER: My brain. Pieces not important”

The TOP SIX entries will each receive a copy of “A Series of Catastrophes & Miracles!” The website: http://www.sixwordmemoirs.com/story.php?did=1053121


The Importance of Documentation

The Importance of Documentation

Documenting your day to day life is CRITICAL when you suffer from a brain injury (TBI) and/or seizures (of any type) to ensure you keep things under control and well managed.

What I use is an app called Moment Diary.

It is available on iTunes: https://appsto.re/us/P7X_u.i, or GooglePlay: https://play.google.com/store/apps/details?id=com.utagoe.momentdiary&hl=en

Documenting seizures is CRITICAL for your doctors when trying to locate an effective medication treatment, and any side effects or trouble in TBI.

It is also CRITICAL if you are unable to work and applying to the government for assistance in day to day living.  TBI disability is difficult enough to prove, let alone obtain federal assistance.  Same for epilepsy, believe it or not!

My history with Disability services after moving to GA (I will publish a full timeline of my injury/to date soon):

  1. I first applied for SSDI in 2000, after I had a diagnosis of Epilepsy for 4 years, and a severe TBI in 1996.
    • You see, the first seizure I had was the day of the injury itself, but after that date all seizures seemed to be subjective – I could feel them, but no EEG or scan could pick them up!
    • My CA State Disability was expiring and I could not seem to shake my seizures.
    • I was unsure of my ability to succeed at a job, so I applied to SSDI in 2000.
    • The Federal Government did not approve my application at that time.  I appealed, denied.
    • I hired a disability agency to assist me with the application process, but they were too busy to truly assist me.  I was disappointed.
    • I decided I was sick of it.  I thought, “Well, I’ll give it a shot and see what happens.  If I fail, I fail.”
    • I began working in a legal office as a secretary/paralegal via a temp placement. It was a bit of a fiasco, but I was partially successful.
    • I managed to take the bus to work, earn enough to turn in my food stamps (EBT) card 3 months before the benefits ran out.  I had been approved for 6 months of benefits and hated the fact I was on food stamps.  I am glad I took the help.  I had taken to selling cds I never listened to and books I no longer read to have money for food.

I use mine to monitor my sleep to establish how long I am sleeping each day.  Immediately after my injury I remember I was sleeping 18, sometimes 20 hours a day!  Immediately following my surgeries, this length repeated again.  I also could not remember things from one moment to the next.  To remember items moment to moment, I spit into the wind and keep notes on loose papers – gathering them together at the end of the day.  I

I record when I go to sleep each night.  Though, now, that is more or less meaningless, as I wear a CPAP (Continuous Positive Air Pressure) to be certain I am breathing through the night because of sleep apnea.  I had apnea prior to my injury.  I recall a boyfriend complaining about my snoring in 1993!  I was not overweight.  I simply snored.

When I have a seizure, I make an entry as to how I’m feeling.  It automatically records the time/date. (There are near icons I choose for certain “events”.  For a seizure I’ve chosen a lightening bolt, #thunder.  For an aura (a “warning feeling”, for me a feeling of deja vu and dread) I put a cloud, #Cloudy, I believe – I choose the images, usually, by an icon.

Then, in the “Calendar View” I place a Star on the date so I can come back to the days with a seizure.

I make the days I had an aura a different color – blue or so – to make it different depending upon my theme.

It’s an EXCELLENT PROGRAM!  I HIGHLY recommend it!  If you don’t have your device handy when the event occurs, you can manipulate the time/date to be correct, only be careful not to enter any events after the event in question.  Save the space by typing a note you don’t intend to keep and modify it later.  The notes are kept in date of entry order.