Walked to Starbucks!!!

Walked to Starbucks!!!

My goal – before my #SurvivalDay20 trip – came true this morning!
I WALKED to the Starbucks near my house (but not the one I used to work, because I’m erring on the side of safety) we now have a SIDEWALK to this one and there still is NOT a sidewalk to MY Starbucks!

  • Same distance (3 miles),
  • I brought my walking stick,
  • I got my favorite drink, since I’ve educated myself on what is GOOD FOR ME,
  • My dad is driving me home!

Gotta love my dad!  LOVE MY #DamnOldMan



I bought the necessary tool to learn this morning!  I will be making MANY MORE posts soon! 

They will be better organized in phrasing and display.  I prefer to teach myself, or learn by having someone show me specifically how to do something.  

Example: My father is upgrading a netbook I used on a road trip in 2010, during my OccupyAtlanta days, and following my favorite guitarist, Roy Zimmerman, on a few shows in 2011-2012.  I will watch him as he does this, so I can take notes and do it myself the next time I need to upgrade a computer.  Dad always upgrades our computers, himself.  I look forward to knowing how to do this.  I bought an iPad 4 after the Presidential election of 2012.  Since that time it has been my “Computer”.  I love this thing!!!  It does not take the SD cards to attach videos or so, which is unfortunate.  I have learned a lot about wireless technology using this device.  Prior to 2014, I didn’t have a smartphone, even.  I received one for SurvivalDay18 from my dad.  

Enough stream of consciousness writing.  I’ll publish this now and write a real post later: after I eat, nap, clean, exercise, shower, get Goose, and get back.


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.

I met an old friend today – it made a difficult day EXTRAORDINARY!

To Joe: 

Hi again, Dear friend:                                                                                                                                                                                                      I hope you don’t mind this rather public means of telling you what today meant to me.  I’ve been thinking A LOT ABOUT YOU RECENTLY!  Our reason for stopping by your pet food store today was not good news – Goose having Severely High glucose levels still -> 450 yesterday!  I have not been giving him insulin.  He started hiding from me because I was giving him the shots.  He ONLY likes me in this world.  If he becomes afraid of me, his little 11 yr old self is afraid of everyone.  I will not have that.  

I want to control his glucose, if possible, using diet alone, again.  I am worried his body is worn out and not able to compensate.  I will leave him at the vet with RAW food and insulin for a week (the vet will give him the shots) and I will give him the raw here this weekend leading up to his week (Feb 15 – 23).  If, after that week, his glucose is not stable, I will talk with the vet.  It’s possible he will need to be put down.  I do not want to do this.  I will get enough of the raw food for dad to feed him while I am gone on my #SurvivalDay20 trip.  (I’ll post another post about the details of my trip, if I haven’t yet.)

This is also on FB, under the same title: SurvivalDay416.  I’m BeyondHamilton on Twitter.

Please, look for me there.  I’ll be sure to come by the store soon, when I know you are working.  If I remember right, the store is already closed Sun/Mon.  

Congrats on getting tickets to Hamilton in August!  I have not managed to get a ticket.  I may try the lottery, online.  Now it is digital.  I’ll give you more up to date info, when I see you again.  I’ll give you a card with my email address & my ph#.  We WILL NOT LOSE TOUCH AGAIN!  I promise you. 

Love to you, 


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*

Flight of thought


Imagine how you feel after 2 beer (or more, if it takes more for you to feel “slightly more than buzzed”).

Imagine that feeling is with you All.The.Time.  You can’t turn it off or shake it.

That’s the world I live in.

– A thought strikes me:

  • I’m sitting in bed,
  • I’m at the coffeepot,
  • I’m just walking around.

– If I don’t write it down THAT INSTANT it’s gone FOREVER, never to return…

– IF I remember it later:

  • I don’t recall the details,
  • My mind goes off on a tangent,
  • I don’t do well in distraction environments.

This is why I talk #NonStop!

This is why I resemble the phrase in HamiltonMusical, “Talk Less, Smile More”

  •      Not only is my ACTUAL last name Hamilton, but the injury to my Right             Temporal Lobe causes me to talk CONSTANTLY!

(I’m awaiting permission for the image I wish to use.  I refuse to use images without the express permission of the creator — if known.)

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.