Catch-Up Mondays: The never ending drive – revisited

I originally shared this blog post on April 7, 2013.  I still cringe at the thought of making this journey by myself.   When my girls were young, one of their favorite movies was “The Neverending Story”.   I experienced the never-ending drive.  This story was originally in my book but didn’t really feel like it belonged where I had it and never really added enough to the story so I deleted it from the manuscript but saved it.  It is another funny story similar to the one titled “Can I help you Ladies?”.   This story starts out with me and my daughter Laura (the same one in the story above).  I chose the Never-Ending Drive as the title for this post and you will understand once you get into it. A few days before the students were to arrive at school, my younger daughter Laura was scheduled to leave for college in San Francisco. My husband was not able to take time off from work so I took the day off to drive her. The night before we were to leave I helped her load the car and trunk as full as we could.  My husband and I would drive up again over the weekend and deliver what was left behind.  I prepared myself by printing directions to her dorm.  I had made the trip before with others but had never driven there myself.  I was going to rely on my daughter to help me with the directions.  I had not been feeling well and was extremely fatigued  I drove to my daughter’s house to pick her up early in the morning.  She was very tired.  I am sure that she had not slept much in anticipation of the move.  We drove through a fast food restaurant to get her some food and coffee.  She was not feeling well and soon fell asleep.  Occasionally I would wake her to see if we were going in the right direction.  She did not know. My plans were to take her to school and hang around until about 7:00 p.m. so that I would not have the heavy traffic to compete with on my drive home alone.  We arrived at the campus and carted all her belongings up to her dorm room on the second floor.  Exhausted, we both tried to set up her computer.  To our dismay, we could not get a connection.  After making a few phone calls, we learned that she needed to take her computer downstairs to an office to have a special component put in it and she needed a certain cord to hook it up to the school’s line. Laura wasn’t feeling well and wanted to sleep.  She had injured her back earlier and could not carry the computer.  So, I picked up the tower and made the trip to get it fixed while she slept.  I was told to pick up the tower in a couple of hours.  By the time I got the computer fixed and back to her dorm it was nearly 6 p.m.  I woke her up and visited with her for an hour and then decided to make the drive home. The goodbyes were hard for both of us.  She was now in San Francisco with no car and not really knowing how to get around town.  She was worried that she would not be able to find her way around.  I was upset because I was leaving my baby in a strange city and would be a two and a half hour drive from her if anything should happen. Reluctantly, I got in my car and drove off, both of us in tears.  I reversed my route and headed for home.  Things were going well.  I had been nervous about driving home by myself in the evening especially because I was not that familiar with the area. The sun began to set and brought with it unexpected challenges.  The glare made it difficult to read the road signs and the traffic was worse than I thought it would be at this time of the day.  I was supposed to take a certain highway number towards home, but there were two of them.  One said east and one said west.  I was confused and there was not much time to make a decision because the traffic was bumper to bumper.  I chose the one that had Oakland written on it. That turned out to be the wrong decision.  After a few miles I began to realize that nothing looked familiar.  It was dark by now and I was not about to get off the highway to ask directions.  I was in an area that was not familiar to me and there were not any major gas stations or restaurants that I could spot from the road. I continued to drive.  The next thing I knew I was crossing a bridge that I knew for sure I had not crossed on my way in.  It was a toll bridge and under construction.  Hesitantly, I paid the toll and crossed the bridge.  I was hoping that I could find some road sign that would give me a clue where I was or where to turn.  My fatigue and exhaustion had become almost overpowering.  I wanted to cry but controlled myself.  I had to get home.  I thought about calling my husband and asking for help but how could he help me if I could not tell him where I was. There was still some time before I was expected to be home so I decided to wait until I could offer some explanation of where I was.  I drove and drove.  Finally, I saw a sign that read Sacramento.  Hooray!  If I could get to Sacramento, I could find Hwy 99 and make my way home. Another hour passed and I was in Sacramento and had found my way home.  I needed to phone home but did not want to admit that I was so horribly lost and that it would be another two hours before I got home.  My husband was worried. He asked me how I could have gotten lost since I had very good directions.  I told him that I did not know and promised to keep in touch as I drove home. Nearly out of gas I found a station that looked to be in a safe area and pulled off the highway.  There would have been plenty of gas if I had not decided to go “sightseeing” instead of driving straight home. Sometime between 11:00 p.m. and midnight I made it home, a little over four hours after I left San Francisco.  Exhausted, embarrassed and hungry, I crawled into bed.  Early the next morning, I got up, got dressed and headed for work as usual. That weekend my husband and I took my daughter the rest of her things and took her grocery shopping.  On our way home, my husband asked me to try to remember which exit I had taken.  In the light of day, I easily discovered what I had done wrong.  The exit I had taken actually took me in a circle and then in a direction completely opposite of where I was headed.  The trip from hell was not one I would ever forget or one that I would ever want to repeat.  I have never made that trip by myself again! I need to explain that a few months earlier I had been on so many medications that we had stopped everything, including my thyroid, to let my body calm down and see what would happen.  My thyroid was a mess and I had just started taking medication again a few days before I made this journey.  I was fatigued and sick.  The drive from here to San Francisco still scares me now so much that I wouldn’t dream of attempting it myself. Have you experienced a never-ending drive that leaves never wanting to do it again?

Catch-Up Mondays: If I Only Had A Brain!!! – revisited

I originally posted this  on February 28, 2013.  I have been posting lately on how MCS affects the brain as well as re-blogging about what others have posted.  I have posted about the loss of words I experience and how I type words wrong consistently even though I can spell them in my head, spell them out loud and hand write them with complete accuracy.  Today for Catch-Up Monday, I am sharing the following post.

BRAIN FOG, BRAIN FOG, BRAIN FOG

I have talked about this so many times and have read posts from other bloggers talking about the wonderful world of brain fog.  I struggle with memory (short-term) and finding the right words when talking.  Worse yet if I am carrying on a conversation and get the slightest interruption, I have no idea what I was just talking about.  Sound Familiar?  This happened a few days ago with my friend Liz.  This time it was her trying to remember what we were talking about.  What did I do?  I started humming my theme song “If I Only Had A Brain” from the Wizard of Oz.  The only part I could truly remember was the title of it.  She couldn’t remember all the words either.  So to you Liz, here are the words.  Maybe next time we can actually sing it together rather than just hum it.

Lyrics to If I Only Had A Brain :

(Scarecrow)

I could wile away the hours

Conferrin’ with the flowers

Consultin’ with the rain

And my head I’d be scratchin’

While my thoughts were busy hatchin’

If I only had a brain

I’d unravel any riddle

For any individ’le

In trouble or in pain

(Dorothy)

With the thoughts you’d be thinkin’

You could be another Lincoln

If you only had a brain

(Scarecrow)

Oh, I would tell you why

The ocean’s near the shore

I could think of things I never thunk before

And then I’d sit and think some more

I would not be just a nuffin’

My head all full of stuffin’

My heart all full of pain

I would dance and be merry

Life would be a ding-a-derry

If I only had a brain

//

(Scarecrow) I could wile away the hours Conferrin’ with the flowers Consultin’ with the rain And my head I’d be scratchin’ While my thoughts were busy hatchin’ If I only had a brain
I’d unravel any riddle For any individ’le In trouble or in pain
(Dorothy) With the thoughts you’d be thinkin’ You could be another Lincoln If you only had a brain
(Scarecrow) Oh, I would tell you why The ocean’s near the shore I could think of things I never thunk before And then I’d sit and think some more
I would not be just a nuffin’ My head all full of stuffin’ My heart all full of pain I would dance and be merry Life would be a ding-a-derry If I only had a brain

//
[ These are If I Only Had A Brain Lyrics on http://www.lyricsmania.com/ ]

BRAIN FOG is like having my head all full of stuffin’. What do you do when you cannot remember a word?  Or when you get lost in the middle of a conversation?

Comment to a comment

Yesterday a dear friend that I met in 2003 commented on my blog.  She was having difficulty emailing me because her email provider had changed formats and it was becoming difficult for her to figure it out.  I have pasted the comment in this post and will add my comments.

 

Kathy!   I love my new towel!   When I came home from treatment I wanted to do something for the many women who befriended me.  I still wasn’t sewing much because of overstimulation but was able to embroider.  I began sending them a towel a year  (The series was Monthly Madness where there was a specific towel for each month like the one in this link for March). 

I’ve been trying for over a week to figure out how to send you an email.   I’m getting dummer and more forgetful.  AT&T changed my format and obviously I’m a creature of habit and finding the right thing to click on to do things I’ve been doing differently for years is driving me crazy.  As we all know when we are in stress mode, our brain fog kicks into overdrive and learning new things and new tasks take on a monumental feel.

Looks like you are keeping very busy.  Are you a millionaire yet?  I can’t think of anyone I’d rather see make a million.  What would you do if you won that much money?    I am excited about my book coming out and hope that the message is well read, I didn’t write this to become a millionaire.  However, if I were to become a millionaire I am sure that I would do more for awareness and those that suffer as I have.

I saw my lawyer last week.  Waldinger wants to settle for $8,500.  Platte County offered $3,500.  My lawyer says both companies are admitting that there was a problem in my work area and he suggests I accept their offers, saying it will increase his chances of winning my lawsuit with the Missouri Second Injury Fund.     I reminded him that the Second Injury Fund is funded by Companies, went bankrupt two years ago and before they went bankrupt they stopped making payments to injured  individuals who had won their cases and the Injury Fund promised to pay them benefits for life.  My lawyer said that everything indicates the Missouri Second Injury Fund will paying people again.  DO YOU FEEL THAT COLD AIR???  HELL IS FREEZING OVER???   A year ago he said that going public with my problems would be beneficial for my cases.  Last week he said “Going ;public with your information will only piss both companies off and they will both resend their offers.”   I said, “What offer?   $10,000 is not enough to pay your expenses and that leaves me with nothing anyway,”  He just glared at me.  I said I’d make my decision in a week.  He said, “You have a very weak case and if you hesitate you may have to find a different lawyer to represent you.”   I said, OK and left.    I stewed over my decision and researched welding poisoning lawsuits and found a government site that said several thousand people have lawsuits like mine pending in courts and the government wants lawyers to settle as many of these cases as possible before they have to admit that Chemical Sensitivity is a Disease and people who have not settled begin winning their lawsuits because the government is fearful that if would adversely affect the United States economy if all of these people who are sick from breathing welding fumes win their lawsuits.  Millions of dollars would have to be paid out and that might bankrupt America.   I guess they don’t realize that America is already bankrupt and owned by China because America has been overspending and borrowing too much money for years.     I’m going to fight because the meager amount they offer isn’t enough to help me.  I’m willing to gamble it all realizing it can go either way.  Too many years have passed for me to sue either company for wrongful termination, salary fraud, employer tort or anything but Workman Compensation. I want my grandsons to know why I “act funny.” Ann I so understand this as my granddaughters have witnessed me with my mask and with a reaction so severe I needed histamine.  That there is a reason why I am not able to go places and do very many things with them.  I want them to know “my story” and your success encourages me to eventually write a book to tell my story.  I just finished reading Canary in the Court Room.It was great.    I had not heard of this book but just ordered it as a download for my Kindle.    I know first hand how difficult it is to fight for your rights in the workers’ compensation arena.  It is a tough battle.  It is a long battle.  You will be made to feel that you are crazy.  Roadblocks will constantly be put in your way in hopes that you will just say it is too hard and give up the fight.  I kept fighting now matter how hard it was.  I was determined for validation from the legal system for what myself and many doctors had stated; I was an injured worker.  I fought when I wanted to just sit and cry.  I was determined that this illness and what had caused it would not win the battle.  I understand Ann’s frustration and determination to continue to fight.  The offering would not even begin to cover her medical costs, lost wages and suffering.  I give her credit for continuing on with this battle against a formidable opponent.

I called my son yesterday so I could bounce my decision off him.  He answered the phone and I said, “I love you.  Pack the whisky and come over tonight because I need to talk.”  He said he’d come earlier if I needed him and I said I was OK but I needed to talk.  He said quit being embarrassed, send your information to 20/20, 60 Minutes and anyone else you want to send it to, keep one copy of everything and thro the rest of these papers away.  If you’re still alive when this crap comes to trial you will either be a rich woman able to afford treatments that will no longer help you – or – you will receive nothing and you continue living like you have for the past 14 years.  You’re a fighter.  A bull dog.  You won’t let go of this until you do everything you believe is important.   If you accept their offers you will never be happy again.  I don’t give a damn if you win or lose this stupid lawsuit.  I want you happy.  I want you to  enjoy your life.  Finish this battle.  Don’t give up until you have to.  To hell with what people think or say or imply when you wobble around.  Ann’s injury causes her head to wobble like the bobble head dolls you have seen in the stores.   Just a small amount of diesel fumes from a semi going by will start the wobbling.  I have witnessed this time and time again. You don’t sleep with them.  The only person you owe anything to is you.  Yourself.  I love you no matter what you do.  Elsa and the boys love you more than anything.  You won’t be happy until you fight this to the end.  Organize this crap, put it in an envelope, mail it and then relax and see what happens.  Shit will hit the fan.  If Waldinger or Platte County sue you for making this mess public what are they going to take away from you?  You have no money.  They can’t take your house.  You can’t work.  They can’t take your salary.  If they win then you win.  Your disclosure will embarrass the Giants which will make you happy.  If you end up getting money fine.  If you get no money and they sue you then your life won’t change.  They can’t get blood from a turnip.  Make yourself happy.   That’s all I want for you.  Damn I raised two great kids!      Well, the short email I planned on writing has turned into the chapter of my book!   I hope you and yours are all OK.     Your very good friend,  Ann      I never got my story to 20/20 or any of the other news shows.  I have written my story and hope that it will reach others.  If it were not for the support of my family and the friends that stuck with me it would have been difficult to keep on fighting.  Ann, my friend, I am in your corner and will continue to offer you support in your fight.

Is that smoke? Is there a fire?

I have had many close calls with near disasters.  Most of these have centered around my brain fog and issues with short-term memory.  The first happened early on after I moved into my “safe” house.  I was sitting on my cot which was not only my bed but my place to sit and read.  Then all of a sudden my smoke alarm was going off!  What could be on fire?  I panicked.  This was my only safe place.  What if there was an electrical fire?  Quickly I began to search room by room.  As I made my way through the living room, I could smell smoke in the kitchen?  What could be burning?  It was a pot of beans that I had put on to cook and then just as quickly forgot about.  After that incident, I began setting the timer on the stove.  Of course the timer only works if you can hear it.

One day my husband and I were outside and we saw smoke coming out of the vent in the kitchen.  Again, a pan was smoking!  I had set the timer and then walked outside and never heard it go off.  Now I set the timer and stay within range or turn the burner off.  I have had so many close calls.  The scariest part is that if my house were to burn, where would I go?

Fast forward a couple of years and it is Christmas time.  I am taking this excerpt from my book:

   On Christmas Eve, Laura and I made a cheesecake. There must have been too much butter in the crust or the pan was not put together correctly because it leaked all over the oven. In my infinite wisdom (and brain fog), I decided that we would just set the oven to the self-clean cycle and watch a movie. Then it would be clean the next morning and not smoke when we cooked dinner. All of a sudden we heard popping and crackling! There was a fire in the oven. We immediately turned the oven off and the whole house smelled of smoke. It was cold but we opened doors and windows in an attempt to get the smoke out. The smoke eventually left but the smell did not. Great! I had contaminated the only safe place I had. My only option was to go into the garage and sleep in the car. But it was so darn cold. My clothes in the house smelled, as did my blankets. My only choice was to sleep in the car wearing two Tyvek suits to try to stay warm, and I occasionally started up the car to turn the heater on. Morning came and, while the house wasn’t perfect, I managed by wearing my mask. But I had the awful task of washing and drying all the clothes my family would be wearing when they arrived as well as all my bedding. We survived but what a story that made.

Have you had any close calls with fires or near disasters because of brain fog or short-term memory loss?  I would love to hear your stories.

Paying the price for a good time.

Is knowing you might not feel well worth the price to pay for a good time?  Last night members of my graduating class were getting together outdoors.  I knew there would be perfumes, etc.  There was a good breeze going so I thought I would okay.  I didn’t attend my tenth reunion choosing to wait until my 20th.  I didn’t have as much fun as I thought I would have then.  I was overweight and wearing braces on my teeth.  I vowed that by the 30th, I was going to go and have a good time.

Then my exposure at work changed that.  I have missed the last two reunions and reunion pre-parties.

I managed well enough with some of the fragrances (or so I thought) because the breeze (ok it was more windy than breezy) was keeping the worst of it away from me.  Then towards the end of my evening, the cigars came out.  I was fine as long as everyone was behind me and the wind carried the smoke away but when everyone changed spots the wind carried it right to me.  I immediately grabbed my charcoal mask, finished my conversation, and decided it was time to leave.  By the time I got home, my chest was uncomfortable, my eyes were itching and burning and I just didn’t feel well.  I took Vitamin C, put drops in my eyes and eventually gave myself a histamine injection and went to bed.

This morning my eyes are still a little itchy, my brain is a little off kilter, my arm muscles are aching (but they were a little achy yesterday before I went) and my legs just plain hurt.

Knowing what I know would I have attempted to go?  Yes!  It was wonderful seeing friends from high school (some I hadn’t seen since the 20th reunion and some I hadn’t seen since high school graduation).  I may have tried to stay further away from everyone and visit from afar but that wasn’t any fun.  So, I am resting and letting my body calm down today.

I learned while visiting with a classmate that she can’t tolerate gluten, is lactose intolerant and the fragrance department in stores cause confusion.  I do not like to hear that others suffer with similar sensitivities.  No matter how severe the sensitivity, their lives have been impacted much as mine has been impacted.  I promised to share my blog and information I have gained about gluten intolerance and celiac disease.  So while I am under the weather today, I was able to touch someone with my story and in turn learn of hers.

Have you chosen to participate in an activity (indoors or out) knowing you my not feel well after?  Was it worth it to you?

If I Only Had A Brain!!!!

BRAIN FOG, BRAIN FOG, BRAIN FOG

I have talked about this so many times and have read posts from other bloggers talking about the wonderful world of brain fog.  I struggle with memory (short-term) and finding the right words when talking.  Worse yet if I am carrying on a conversation and get the slightest interruption, I have no idea what I was just talking about.  Sound Familiar?  This happened a few days ago with my friend Liz.  This time it was her trying to remember what we were talking about.  What did I do?  I started humming my theme song “If I Only Had A Brain” from the Wizard of Oz.  The only part I could truly remember was the title of it.  She couldn’t remember all the words either.  So to you Liz, here are the words.  Maybe next time we can actually sing it together rather than just hum it.

Lyrics to If I Only Had A Brain :

(Scarecrow)

I could wile away the hours

Conferrin’ with the flowers

Consultin’ with the rain

And my head I’d be scratchin’

While my thoughts were busy hatchin’

If I only had a brain

I’d unravel any riddle

For any individ’le

In trouble or in pain

(Dorothy)

With the thoughts you’d be thinkin’

You could be another Lincoln

If you only had a brain

(Scarecrow)

Oh, I would tell you why

The ocean’s near the shore

I could think of things I never thunk before

And then I’d sit and think some more

I would not be just a nuffin’

My head all full of stuffin’

My heart all full of pain

I would dance and be merry

Life would be a ding-a-derry

If I only had a brain

//

(Scarecrow) I could wile away the hours Conferrin’ with the flowers Consultin’ with the rain And my head I’d be scratchin’ While my thoughts were busy hatchin’ If I only had a brain
I’d unravel any riddle For any individ’le In trouble or in pain
(Dorothy) With the thoughts you’d be thinkin’ You could be another Lincoln If you only had a brain
(Scarecrow) Oh, I would tell you why The ocean’s near the shore I could think of things I never thunk before And then I’d sit and think some more
I would not be just a nuffin’ My head all full of stuffin’ My heart all full of pain I would dance and be merry Life would be a ding-a-derry If I only had a brain

//
[ These are If I Only Had A Brain Lyrics on http://www.lyricsmania.com/ ]

At a loss for words.

Don’t you just hate it when you lose or can’t retrieve the word you want from your brain?  Since becoming ill I have found it is a regular occurrence.  I will be talking to someone and in the middle of a sentence I can’t come up with the word I want to use.  Try as I might, the word won’t come.  Sometimes I have been successful by trying to find another word that means something similar.  In the middle of a reaction as I was in yesterday, I was hard pressed to come up with the other word.

What was the word you say?  I don’t know.  I still don’t know.  I was trying to convey how when dealing with someone I would just respond very vaguely without giving either a yes or no answer.  As I was searching for the word I became tearful.  I tried and tried and finally came up with equanimity (calmness, poise, serenity, self-possession).  It seemed to work but wasn’t really the word I wanted to use.  Maybe I was wanting to use apathetic (showing little or no emotion, indifferent, not interested or concerned).  As I am writing this definition I think that is the word I wanted to use.

As hard as I try to retrain my brain by reading, crossword puzzles, etc. I still lose words in conversation even more so in the midst of a reaction.  I still find when I type that I transpose the same letters in certain words over and over again even though I know how to spell the words.  Yesterday when I was in the reaction my handwriting became hard to read (see picture for a sample of my handwriting in my journal during a reaction) and I spelled things wrong, my right hand became very cold and I had a much harder time expressing myself.

I have been told that mold mycotoxins can damage brain cells.  Sometimes you regain some of the processes you lost but usually not all of them.  When I was first exposed to mold (didn’t know it then) I would take phone messages and then look at them and realize they didn’t make sense and have to re-write them. Sometimes my boss would come in and ask me what the message meant even after I am sure it had been rewritten.  My handwriting was also deteriorating .  At the time I would become frustrated over this but it never dawned on me that something serious was going on with me and my brain.