Category: Epilepsy

Hamilton 

Hamilton 

I’m a Hamilton.  The musical is FAR more than I expected.  I never thought I would enjoy hip-hop, yet I know the full musical by heart!  That’s what it takes, sometimes, for Lisa to try something new.  Make it ABOUT HER and she’ll pay attention.  So he did.  Thank you, Lin-Manuel Miranda.  Like many, I dare say, most Americans, I knew nothing of Alexander Hamilton until you wrote your musical based on Chernov’s biography.  I have his book as well, but I have a problem with reading paragraphs since my ViSuALvErTIgO kicked in Summer of 2010.  
I carried a stone for A.Ham from October 2015 until I left it upon his grave on April 23 or 24 (I will look up and confirm the date, I believe it was the 23rd). Yes, the 23rd. I carried it with a stone for Anne Frank.  My Survival Day 20 trip was as much about Anne and Holocaust rememberance as it was about my SurvivalDay.  We have a wolf at the door.  It is frightening how few people who shout and scream about losing freedom ignore the wolf at the door.   

I am posting this now to post the images I have from the graveyard at Trinity and where I stayed and strolled on Jane Street, where A.Ham died after his duel.  I believe the day I left the stone for A.Ham was also the day I fell, injuring my hand.  As I’m learning “It’s Quiet Uptown” on guitar as part of my Occupational Therapy in recovery, I guess this brings me full circle.  My OT said if I practice guitar for 1/2 hour a day that can count for therapy, I can ignore the exercises she gave me.  Done.

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Update: August 8, 2016, but not saved until after midnight, so August 9, 2016:  I changed the image from the one I took of Hamilton’s tomb to my dog tag, because this isn’t a normal fan post.  I would also like to thank annalisareyanne and her redbubble page for its products/designs of HamiltonMusical.  It was her image I used, with permission, for this dog tag on cafe press.  My tag isn’t searchable, that I know of.  I’m not set up, or interested in making money.  I’m also szrgirl on YouTube.

Practicing guitar after 3 months in a wrist brace and finger splints was a HUGE MISTAKE, though!  I played for 20 minutes in one day, understand I don’t really know how yet, and spent the next 2 days in EXCRUCIATING PAIN!  I was in tears today at OT.  She told me to #TakeABreak so I will.  I see my epileptologist tomorrow, OT Thursday, ViSuALvErTIgO Friday…  and on it goes. Doctors Doctors Doctors…

The Starbucks Article by Epilepsy Foundation: “Coffee Break” 2008

and now I type… This was available online Coffee Break until I was about one week into traveling for #SurvivalDay20.

It’s nearing midnight and I’m typing one handed, predictive-type-assist, so I won’t edit much here and now, but THIS explains the beauty of my interaction with Starbucks and the importance of Survival Days.

#SixWordMemoir

#SixWordMemoir

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

Traveling is more complex than I thought

I’m having a fantastic journey!  It is more complicated than I anticipated.

I didn’t realize the strength of my deficits.

  1. Focus – list list list list,
  2. Time – it slips away!  Set a timer every 15-20min to stay on task,
  3. Pack/repack – why did I pack so much?!?!
  4. Money – disappears as quickly as the hours,
  5. Friends – invaluable!

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.

Managing my day begins the night before

It begins with a list.

A “Lisa List”

Before I go to bed, I reorganize the thoughts I had during the day (usually scattered on many sheets of paper) of what needs to be done onto one sheet (or successive sheets) of paper.

Like today, my to-do list consists of:

  1. WALK!
  2. Put my bathroom towel in cat carrier
  3. Cat carrier in living room
  4. Load videos (szr/slideshows) to iCloud
  5. Burn Bk2 for dad
  6. Catch Goose for vet
  7. Goose to vet 2pm (DO NOT LET THEM LECTURE ME)
  8. SLIDESHOW to Hamilton?

– “Eye of the Hurricane”

– “Say No To This”: Superimposed over my szr video

Write Blog post


Now I’ll explain it to you:

  1. Obvious, except it is COLD outside, upper 30s
  2. I put my used towel in the cat carrier so it smells like me
  3. It’s not a fair fight if he doesn’t see it coming
  4. A friend of mine who educates people with his szr videos had his YouTube hacked. I don’t have my videos backed up.
  5. Dad loaned out our Harry Potter: Chamber of Secrets. I found it on an old computer yesterday. It’s up in rotation again. He listens to the CDs as he drives(5+years in rotation) as I have when I sleep (nearly 10 years! Since July 2006 #NonStop)
  6. My cat’s name is Goose
  7. I stopped giving Goose 1ml insulin for diabetes because he started hiding under the bed. I’m controlling with diet.
  8. I know HamiltonMusical by heart because it is my exercise music.

– “Eye of the Hurricane”: I compare to my climbing out of disability
– “Say No To This”: is a Grand Mal Seizure, I’m going to check if it will fit over my szr video on YouTube. I’m szrgirl.

I started the day backwards.

—-> also, after I wrote this I sat and stared at the walls for an hour or so. I had laid down on the loveseat, our “couch”, something I never do. I opened my eyes to see dad drinking his morning coffee in his computer chair.  I closed my eyes again.   I forgot what I was doing. I forgot I even wrote this, privately published.  I went back in here, deleted a photo of Goose placed in the wrong spot. I got dressed for walking (mostly). Now I will place Goose in a better spot and walk. It’s time to start my day!

 *Please forgive the ragged formatting*

The importance of safety

It is critical to respect the realities of having a TBI and epilepsy.  Anything can and may happen.  I ordered a Medic Alert bracelet in German to wear alongside my English bracelet while I tour Europe.  My German friend of 30 years assisted me with the translation.  Though many people are fluent in English, I cannot depend upon that being the case if I have an emergency while traveling alone.  I am alone, most often, in Germany, the Netherlands, and England.  England, there is no trouble.  The Netherlands, most people speak two or three languages.  If they do not speak English, they may speak German.  Germany is the sticker.  For the most part I am traveling alone in moderate to small towns.  

I have an ungrounded wire in my neck still attached to my vagus nerve from a Vagus Nerve Stimulator (VNS) removed in July 2007.  It didn’t work for me.  I was one of the 3% it made my seizures worse.  I can have only one very specific type of MRI without damaging the nerve.  The leads attaching the wire to the nerve become part of the nerve by growing into it.  As mine was implanted in March 2005, it is a permanent part of me now.  We removed the battery in July 2007, as I mentioned.  The battery did not need to remain.  It was a bulky, uncomfortable, pacemaker-device under my collarbone.  Every time I tried to sleep on my left side it would attempt to leap out of my chest.  I can have any scan or ex-ray, just not an MRI.  That will heat the wire and damage the nerve.  It is critical I not receive the wrong type.  So critical, I purchased two bracelets for my #SurvivalDay20 trip.  I don’t fool around with safety in these matters.  It is too important.  I have come too far to risk anything so easy to remedy by a simple preventive measure.