2020 Pandemic- Covid 19

It's been since March 2020 when everyday routines were suddenly changed forever.  Welcome to the worldwide Pandemic-Covid 19.  A sneaky little virus that can either make you very ill or kill you!

Not only has it shut down the economy all across the world it further widened the divide between the "haves and have nots", the Democrats and Republicans, Caucasians and people of Color and rational thinking.  Anger and Fear have taken over.  Anxiety has reared its ugly head too.

Fast forward, or not, it's November.  Here we are still in semi quarantine.  In fact, it looks like the country is about to go on a lockdown again because the current leadership has sacrificed lives for the almighty dollar.  Don't get me wrong, there is no easy solution to our situation.  I sympathize with business owners and the employees whose jobs are in jeopardy but, I can't help but wonder if a brief tightly controlled shutdown would be better for the economy in the long run?  The every state for themselves, based on party politics (unfortunately almost all Republicans) hasn't worked.

My travel has been severely curtailed, but, I am blessed to have my every need met with no worries so who am I to complain.

Three years since my last dose of anti seizure and migraine medications.  I think eventually I will truly document my journey to independence in this space.  It's actually what my daughter intended when she recommended that I journal, but I didn't have the memory or the confidence to document my life.  Getting through the day was a challenge in itself.  I may look normal but remember, I'm Not Quite Right. So much has happened it's hard to know where to start.  

They have NO idea.

My Dad, my Brother Chet, Gone

My past is shrinking.  My father, Chester Andrew Reasoner died March 4, 2018 after a battle, I believe, with a broken heart.  My brother Chester Leo Reasoner died May 3, 2018 on my daughter Lauren's (his goddaughter) 25th birthday.  Just two months after my dad.

See, 14 months prior Chet was found struggling in his room at my parent's house from low blood sugar.  He was seizing and aspirated his own vomit.  Thus landing on life support with constant seizures.  He never recovered.  He came off life support, was up walking, feeding himself and could hold a conversation.  His behavior was erratic and unpredictable but it looked like he had a chance to get back into life.  He was discharged from rehab to a nursing home in Trenton with the plan to be discharged home.  He didn't last 24 hours in the facility, after telling Aunt Winnie he needed to hurry up and get better so he could "get the hell out of here" he lapsed into round the clock seizures threatening his life once again.  He was never the same again.  Even though the seizures stopped he was destined to live out the rest of his life on a feeding tube unable to care for himself.  He was in long term care at the Princeton Acute Care Center

So, it's been awhile Now I live in Arizona Anthem to be exact Many life changes

Move complete.  Harrison is not happy here because he has no friends, and has met no one in our neighborhood his age.  At least he has his internship so he is busy all day, and is gaining valuable work experience.  I don't think he will ever forgive us for moving him away from his lifelong friends.  There is no way to change that.

I  just completed a 3 day hospital stay in the Epilepsy Clinic at St. Joesph's.  I was discharged after testing showed I was not having seizures, I am having "events".  one less medication, yay!
The testing had me hooked up with multiple electrodes in my head to track my brain waves.  I was essentially tethered to the bed.  I could not move unless a staff member came to help and I had to carry and fanny pack that held the controller to the wires in my head.  I was videotaped 24/7 and they took me off of my Vimpat cold turkey. My other medications were administered at lower dosages and not on my schedule.  A strobe light test was administered to see if a seizure could be triggered.  While an event occurred no seizure activity shown on the EEG.  Instead of the 5-7 days I only stayed Friday to Sunday afternoon.

Happy to be taken off Vimpatt the entire experience left me feeling broken.  My body and brain are fuzzy and I need to reset myself, as I say.  Walking is slow and my balance uneven, my speech comes and goes and I have no appetite.  Being in a totally different state without my support system leaves me feeling alone.  My trainer/friend Gina is concerned and I am closest to letting her in to this private world of mine.

It is hard to gather and communicate my thoughts, this is the best I can do for now.  My vision is so blurry typing is difficult.  I have been mis typing, and do not know how to use spell check on this new computer, so the delete button has been used throughout this entry.

I will end here because concentrating has become difficult and I really cannot see what I'm typing very easily.  My vision is blurry.

My one follower is my biggest cheerleader, my daughter, Lauren.  She encouraged me to start this blog.  I haven't written an entry since May 2015.  Maybe one day someone with start reading this and it will touch someone, until them maybe it is just an exercise for me to try and record my thoughts, feelings and experiences as my daughter intended.

Moving to Phoenix

Out of my mind and element.  Currently have to prepare house for move alone.  Does anyone realize what a challenge that is?  Yes, I'm glad my husband was hired for the job of his dreams, but, did he think of all the work involved to get a house ready to move when he decided he would start May 1?

We still had two graduations to get through, on the same day in two different states, I might add.  The bulk of the house work with contractors, real estate agents and decluttering falls on me.

I am doing my best, and about to say to the real estate agents if people can't see what a comfortable home this is to live in just because my closet has clothes in it, neatly I might add, and my counters are not completely empty of canisters and coffee makers than they don't deserve go live in a loved home.

I'd like to see the home they are selling.  Too much HGTV!!!!

Rant finished

The Fourth of July and Fireworks they don't go to well with my brain

I forget, did I mention my set back a few weeks ago?  I think I did, and the fact that I just wanted to give up trying to rehab my brain.  Yesterday was the Fourth of July.  I don't begrudge anyone their fireworks, sparklers etc., however, for me it is the longest night after New Year's Eve.

I shared a Facebook post yesterday, it showed a vet standing with a sign saying something like, please be considerate of you local vets when using your fireworks today.  People don't think about the effects it would have on any military veteran, they may be living with Post Traumatic Stress and fireworks could bring flash backs and cause tremendous stress.  Well, that is true for me too.  I was sitting on my patio with family and the first firework went off, of course we were all caught of guard, but hey, it's the Fourth of July so our conversation kept going.  Then the second one, uh oh, my brain went into shutdown mode.  I lost concentration and my brain's processing skills started to shut down.  My speech began to slur and my family gave up the pleasant evening on the patio to go inside so I could still visit with them.

My husband's cousin Terri was visiting with her husband Keith and their son Miles.  Terri is a physician and she immediately noticed the effects because I was talking to her and my speech went slurry.  The look of slight fear, yet love on their faces meant a lot to me, I was trying to push my way through the noise so we could enjoy being outside, it just didn't work and they were not going to allow me to regress for something that could easily be stopped by just going inside away from the noise.  I offered to get my earplugs so we could stay out there, but each time a "pop" went off I got worse.

One minute I appear to be just like everyone else and the next minute, because of a noise, my brain went into shutdown mode.  For Terri and her family I believe it shocked them how quickly it happened. The positive note is that once we got inside within a few minutes I was okay.  She was complimenting me on how much better I looked from the last time they saw me, and then she saw how quickly things can go wrong.

Yes, I have recovered so very much and I am grateful I was able to work hard to achieve this level of functionality. (is that a word?) I also understand how quickly I can lose it. So what do you say when people say you are doing so well, especially since the last time I saw you?( that's a killer statement too, because gee, how bad was I the last time I saw you? Or, I might not even remember when I saw you last!) For all you know I just spent 3 days sleeping and doing nothing that required concentration because a smoke alarm went off and I didn't even know what "Cheryl, let's sit down right here", meant?  I don't even know where that last sentence started and so forget about the correct grammar. Note: this is intended especially for my daughter the English Major who is probably the only one who reads these since she was the one who encouraged me to write down my thoughts.  I don't think she will read this one thought, because is studying abroad and has other more fun things to do.

Well, I got up early this morning to check my son in for his trip tomorrow then something told me to jot down a few thoughts.  Now you have the benefit of my ramblings and what I wanted you to know.  If you take away anything I hope it is to just be considerate of others if you know they are living with some condition that is invisible and you know some of your actions, loud music, fireworks etc. may cause them problems.  I had a neighbor that got "pissed" her word not mine New Year's Eve because she said we asked her to turn her music down.  Okay, neither my husband nor I remember calling their house and complaining yet she and her husband harbored that anger for six months, really?  They know my struggles, hell she took me to the hospital from the side of the road.  And you know what?  Her damn music was probably too loud if she says someone, oh wait me, called and asked for it to be turned down.  This is a quiet neighborhood, people have parties with music, if you want to blast it use the lodge we have available.  Seniors live all around both of our houses bet they didn't want to hear it either.  So, thank you to whoever called and asked them to turn the music down because I probably wanted to and Darren stopped me.  I think she said they had it on inside and after midnight they put it on outside too.

Lost my train of thought, I was just going to sign off and quit writing.  I think after I spell check I will post this blog, I hope it gives someone food for thought.

The Mama Bear: If I could I would take the test and ace it.

I want my son to have the ACT score he dreams of for applications to colleges.  I want to help him the best way I know how.  I don't believe in paying thousands of dollars for classes, we did pay for a tutor for math only to find he really knows what he is doing.  I believe the classes where you sit for four hours for weeks on end and review, taking 4 practice tests during that time are a great idea if you want to drop $2000 at a minimum with no guarantees. I can afford that, but I won't do it.  And what about the kids who can't?

I know my son has this thing about tests, especially the ones people put so much emphasis on.  He wants to do well, but, he scares himself into believing he just can't do it.  It is not true. He is truly a smart boy and can compete with the best of them.

For example, when he needed to ace a final to get a B in Geometry just to stay in Advance Placement classes, he studied hard and did it.  Second case in point, he was so close to a C in Physics this year he really needed to do well on the test and last few projects in order to earn his B without taking  the final, he did that too. So what is it about this ACT?  He is missing the easy answers when he studies at home, and sees that when he reviews it. He second guesses himself when he is not sure and gets it wrong.  I just now told him, your brain gives you the right answer the first time, 9 times out of 10 when you are guessing and he told me he noticed that when he was checking answers. He could see where he erased his first guess and put the second one which was wrong.

Where do I come in?  I search all over the internet to find study tools to help him, I helped him take a practice test, timed as if he were there. What I noticed?  He really doesn't want to focus so hard, he hates tests.

My advice, this is one of the most important tests for him right now and he has to study and then go into testing with focus and a positive attitude.  Will he listen to me?  I don't know.  I want so much for him to get a great score, he did well the first time but wasn't happy, so I want this one to be the one that he says, "okay, I wanted to be in this range."

I can't make that happen, can just give the tools and encourage from the sidelines.  Isn't that hard? I want him to have the same determination I use when I am trying to recover from setbacks with this brain injury and I wish he would use my hard work as an example.

I can only wish, encourage, test, and pray when he goes into this test on Saturday.  I hope he finally got the lesson that if he can pull a B in Geometry and a B in Physics through hard work and determination, he can achieve the highest score he has set for himself on this test.

I don't want him to be disappointed, that is life you know, but, we moms we try to always catch our babies before they scrap their knee.  Not a big "boo boo", but you just don't want them to have one at all.

The lesson is in the letting go and he has to prepare with all the tools at his disposal if he so chooses.  You can't help someone focus on a test, especially not this one.  It is up to him to put his eye on the prize and go for it.

God help me.  Saturday thru the day the results arrive will be some of the longest days of my life.

Two Steps Forward, Three Steps Back

You never know when something might trigger a problem with this unhealed brain that I have.  We've found that the dosage one of my medications had become toxic.  I was hallucinating and had  become confused often, especially when I was waking up in the morning.

First, we change how many times a day I take my medicine, nothing.  Then we change the dosage and keep taking it 3 times and day.  And, he wants to change the other medicine dropping the dosage.  I say okay.  Then after I hang up the phone, tell my husband the plan, it was as if my head spun around like Reagan in the exorcist and I tell my husband in a very mean voice, I refuse to do anything.  I will not change the dosage, I will go back to how I was taking it and I will especially not change the latest dosage of the second medication.  I was very angry at everything.  I felt it was a guessing game and I was tired of guessing.  Let me say again, this happened in the space of 5 minutes.  Brains are funny organs!  Remember the brain controls everything and when it is "in a mood" look out people!!

My husband very calmly, tells me to go take a shower and think everything over.  I do so.  In the shower I decide I am going to take some control over this medicine guessing game.  I come out, apologize for my outburst, and tell him I will go down on the dosage of the first medicine, but, I refuse to do the change in dosage of the second medicine.  He very calmly says it makes sense not to change two things at once.  By changing one of the medications we will know if that was the problem or not.  Then we will know if we need to make the other change or not.  Victory!  I have some say in this madness.  The next day I call my doctor's office and tell the nurse to note on my chart I refuse to change the dosage of the second medication.  She is a little surprised, I think my doctor just decided not to call me back and discuss it because he knows Darren is here and if necessary the change will be made whether I like it or not.  Especially since I can't even fill my own medicine container because I get confused.  Oh well, go me I got one small victory.

Fast forward to last Saturday, May 24th 2014.
Trying to be supportive spouse, we decide it would be okay for me to go to dinner with Darren.  It was at his manager's home and there were only going to be 7 people, no problem right?  How wrong could we have been.

The woman left the steaks in her car over night, was just going to serve us salad, asparagus, baked potatoes and the appetizer. (no one ate that by the way, except she fixed me a plate and I was stuck.  It was nasty)  Thank God daughter convinced her that was not a good idea, plus the daughter doesn't like vegetables.  Long story short, the woman starts to sear the steaks, doesn't turn on the exhaust and the smoke alarm goes off!  Hello me.  No earplugs, I'm startled and looking for Darren in this tiny apartment.  I am so confused, she waves a towel at the detector and someone sits at the apartment door to keep it wide open and let the smoke out.

My speech and patience are gone.  Of course the seizures want to come and I am trying so hard to appear as if I can handle it.  Yes I  had trouble. My brain was slow to process things like walk across the room to the table etc. What a nightmare!  And I am worried about embarrassing my husband.

I have spend Sunday, Monday, Tuesday and Wednesday with slurry speech, processing issues and exhaustion.  It will take awhile to recover.  I know I will because I will work hard to do so.  This time, when I woke up Sunday morning, I didn't think I wanted to even try.

Life had been going so well for so long I got tricked into thinking I could venture out farther and expand my comfort zone.  Now I am back to being a hermit.  I do walk 4 miles each morning with my neighbor, that helps me a lot.  It will help with my speech.  If I talk slowly it's not as slurry, she understands that it may take me time to think what I want to say and then say it.

I just never know when my brain will be attacked.  That's how I look at too much noise, and that damn smoke alarm.  They are attacks on my sense of normalcy.  I would like to attend functions with my husband and children.  I have already missed too many awards nights, (will miss another tonight) and dinners. The first question my family asks is, "will it be too noisy, do we think mom can go?"  They love me so much and are always looking out for me.

I guess I will work my brain back the best it can be and I will adjust my medicines, that's what this blog really is all about.  There's hope for those of us that live with traumatic brain injuries and we should keep pushing forward.

Two steps forward, three steps back.    I have started my two steps forward again.  Anyone reading this who is having similar frustrations, take the two steps forward with me.



No promise on grammar.  Just forget about it  ;-)