I’m In Amsterdam and Fine

  1. I apologize for the lack of a blog to this point.
  2. When I explain, I hope you will understand.
  3. I finally ate a decent meal today!
  4. I finally parsed my luggage down where I can (almost) carry it alone!
  5. I would like to mail a chunk of it to my brother where I will meet him at a future date in my trip, but I don’t know if I will have time.  I’m only here the entire day tomorrow, before moving on.  It’s the “moving on” that causes a problem…
  6. To describe what it’s like managing my life with a Traumatic Brain Injury, I refer you to Claudia Osborne and her entry TBI What’s It Like.  I resemble this in almost every respect!  (Imagine having these challenges and trying to tour Europe on a schedule!)
  7. I decided to simplify life tomorrow and purchase a guided tour of old Jewish Amsterdam, to include a “semi-private tour” of the Anne Frank Huis and allowing me to browse as long as I feel I need within.  As Anne is such a critical centerpiece of my trip, I do not want to miss seeing her hiding place.  I cannot, with the challenges noted in Claudia’s profile video above, realistically expect to manage tomorrow by waiting in line 2 – 3 hours and returning to see it at an assigned time.  I’d rather have the guided tour, at a set time I can plan to arrive.
  8. It also includes additional Jewish history of Amsterdam, which I did not expect I would experience.  That will be lovely!  Well worth the cost of the program for the peace of mind, alone.
  9. It’s a very tiny tour.  Only 20 people total!  I managed one of the last 9 spaces in my time slot.  Only two time slots available tomorrow and the first time was sold out. #IDoneGood!
  10. Tomorrow I will see the Anne Frank Huis!
  11. Now I can sleep and not concern myself with waking up at the crack of dawn to stand in line forever!  #IamSoSmart!
  12. Only now is not the time to try to play with my camera! DUH!  It’s 12:35am here now!! Time for bed, peoples!! Yike! Gonna sleep!



First Post of SurvivalDay trip!

I apologize for no posts, when I’ve been traveling since March 18th

  • This trip is beating my ass!
  • I packed FAR TOO MUCH!
  • I can’t go into it much now, but I’m investigating various options, including:
  1. Each time I stop to #Shuffle #Regroup I lose more stuff, but my packs do not have wheels.
  2. I am exhausted and starving! (The stores that take credit cards are no longer open…)
  3. I’m fading fast… I’m going to bed now.  I wanted an entry today.
  4. I’ll format and add photos tomorrow.
  5. Til later.

#LookAtYourselves #AreYouProudOfYourselves #ThinkAboutWhatYouAreDoing

#LookAtYourselves #AreYouProudOfYourselves #ThinkAboutWhatYouAreDoing

I only HEARD about this until this morning.
I watched it for the first time a moment ago. 

It sent a #ShiverDownMySpine!

My #SurvivalDay20 trip is as much about the Holocaust as it is about my recovery

I thought I was #AnneFrank in the hospital #ForFucksSAKE!

Nothing, I repeat NOTHING is so bad about Hillary or Bernie that can excuse voting for this #PieceOfSHIT!
–>> Think about Niemoller’s poem #RightNow and ask yourself what you need to do:
First they came for the Socialists, and I did not speak out—

Because I was not a Socialist.
Then they came for the Trade Unionists, and I did not speak out— 

Because I was not a Trade Unionist.
Then they came for the Jews, and I did not speak out— 

Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

Holocaust Encyclopedia

I’m walking to Starbucks again today! YAY ME!

It will be high 50s & 60s today, 0% chance of rain!  Perfect weather to walk so far!  But first, I must:

  • Make sure I have my wallet – I need OTC (over the counter med, Ranitidine) I take for my trip at Walgreens, on the way and across the street.  –>> Actually, this can wait!! It’s out of the way and I need my ACTUAL Rx again before I go.
  • Check stock (online) of Prince of Tides at Barnes & Noble (I want to physically purchase a book in a book store, not Amazon, before I leave for NYC.  Patrick Conroy just died and Prince of Tides is LUSH with Southern imagery and will help me with my blog.  I want to gift this book to someone at the beginning of my trip and remember to bring my copy of the actual book on my trip!)
  • Look at my Shutterfly account. I think I have enough credit for another copy (copies?) of my Germany 2003/2004 photo album that I completed the day before I entered the hospital for surgeries 2 and 3. (It was due 12/10/2007 and I finished it the night before!  I remember because that was the date I entered the hospital for my next round of surgeries.)
  • Consider upgrading the tiny laptop if I can’t get wifi to work at Starbucks. I’d rather have one that can run the video program I purchased (Corel VideoStudio), anyhow. *Don’t over spend!! Don’t get this if you can’t!! You need to be able to pay for what you need!
  • Possibly purchase another Ravenclaw Quiddich jersey (if it will get here in time) with my name on the back, but now my size – this one 2x is HUGE!
  • My photo book front:
  • My photo book back: 

Yep, I forgot to get a photo of us!

Meh, it’s okay.  We spoke and she knows how much I appreciate her and her style.  She didn’t increase my blood pressure medicine, as I thought she would.  It seems my blood pressure is doing much better, even though it was still elevated.  She gave me a “vacation Rx” for my blood pressure medicine.  BUT I got home and discovered I already had 66 pills left in the same med from a Publix Rx she wrote last month.  I’m going to bring the paper Rx she just wrote with me on my trip.  Doc says the med (Lisinopril) is OTC in Europe – I need to check this – but I can fill it in NYC if need be.

If you read this, doc, I got this under control.


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,