My heart hurts
Was it love
Or too many desserts
Or God from above
Does it matter
Why I cannot take a breath
My heart goes pitter patter
Along the path to my death
How did I get here
After exercising too much
Did I cause too much wear
Or is this a crutch
Did I eat the wrong food
Mostly salads and meat
Pizza when in the mood
Along with something sweet
Ice cream and cake
Cookie dough with glaze
Maybe a shake
I did graze
Food or exercise
The doctors do not know
I wonder if they are wise
Or trying to collect dough
Test after test
What do they show
Nothing in my chest
Maye my heart flow
More tests and protocols
To see if my veins are clear
Just wait for our calls
And keep a good cheer
Sometimes it is hard
To be enthusiastic
When you cannot walk the yard
Or anything too drastic
I cannot breathe when I piss
I cannot breathe climbing up the stairs
I cannot breathe to walk the block
I cannot breathe playing in the pool
These are not drastic actions
And it is very tough
No to have reactions
When I cannot get a puff of air
I walked 10000 steps daily
I lifted weights daily
I used the elliptical for 30 minutes daily
I performed yoga every two days
What happened to me
Will it go away
Can they fix this stuff
Or keep it at bay
I do wonder
Can it be fixed
Or do I go under
My thoughts are mixed
Issues upon issues
Troubles upon troubles
Stress upon stress
Anxiety upon anxiety
Thinking can be worse
Worrying for naught
Or is this a curse
And I got caught
Or is it a side effect
Of a Covid shot
Is there a connect
Throwing it all in the pot
Heart inflammation
They do say
Maybe a causation
To take me astray
My shot in late March
My condition sometime in April
Is there a connecting arch
Or is this gossip or a fable
I did not respect my health
Keep track of my friends
Sharpen and expand my mind
Or appreciating my wealth
Do I have remorse
Concerning all these thoughts
A strange force
Bothering me a lot
Why do they bother me now
I have lived a long time
Will it change somehow
My story rhyme
The pace my life progresses
In a repetitive motion
Failures and successes
Indifferences and emotions
Up and down
Round and round
A priest or a clown
Mute or with sound
What I have learned
Is I can fight it
But I will get burned
Or use my wit
Learn the dance
Forward and back
Retreat and advance
Seek peace and attack
Dancing is easy
Moving to the beat
Not at all cheesy
Beautiful when expressed
The dance presents understanding
And maturity
Your emotional health is expanding
Giving you security
Security to be yourself
Security to let someone go
Security to be alone
Security to be alright
Alright is not hard
Or overrated
You can lower your guard
Throw away things hated
Why walk on eggshells
Every step of the way
Jump at each bell
To keep the family gay
Wait to be invited
Like a waiting taxicab
Feel judged and indicted
A jab or a stab
Sounds very frightening
But all I wish
Is emotional enlightening
And to dance with a swish
Twirl about
Skip to the tune
These things have no clout
I am immune
I dance with charming traits
Knowing I am good
And so much awaits
Without any falsehoods
Taken for granted
Highlighting my faults
Their beliefs are slanted
But I will waltz
To their reverberations
And their misrepresentations
Dancing on my foundations
Forgetting the frustrations
My dance is divine
To and foe
And it is all mine
The ebb and flow
The coming and going
Enjoying the song
That rhythm flowing
I have grown strong
I do not know
Does it really matter
The ongoing show
Life and dreams in tatter
My brain goes dead
My eyes are hurt by sunlight
My sudden falls I dread
My words are not right
A rare disease
A common anxiety
Just please please
Not so much variety
Give me a concern
Give me a fight
Give me a turn
Give me the right
Right to control
Right to fix
Right to be whole
Right to end the conflicts
Conflicts of doubt
Conflicts of pain
Conflicts to act out
Conflicts of strain
I am tired
What is worse
A life expired
Or alone in the universe
I am not afraid to die
Jesus is there
It is not a lie
In the Lord’s care
I afraid to be alone
It is stressful
A great unknown
Very distressful
Why why why
Can I not be content
I want to cry
A great torment
Tormented by what
No human touch
Not clear cut
Or just too much
Do I smother
Do I overwhelm
One after another
Making it my realm
Drive people away
Make them afraid
To share and play
My torments are homemade
I cannot understand
A balanced life together
I demand and demand
All to be hooked by a tether
Can I change
Find a way
To rearrange
My greatest dismay
Confined in solitary
I have friends
We can be merry
But that where it ends
No one to dance
No companionship
No romance
No courtship
I have tried
I have bailed
I have cried
I have failed
It is my fate
To go one more time
Is it too late
To make my life rhyme
Be told
Be courageous
Be bold
It is advantageous
I was diagnosed with Functional Neurological Disorder (FND) on Wednesday on July 8th. According to National Organization for Rare Diseases, FND is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis, Parkinson or stroke.” This disorder is an improvement over my self diagnosed diseases and disorders. I am happy that I have it than the other alternatives.
For six years, I have struggled with a many weird issues which came and went at random. These issues are unpredictable and debilitating. I struggled with the unknown. When no one tells you, what is wrong with you, then you begin to wander through the possibilities. I found and latched on to Progressive Supranuclear Palsy (PSP) two years ago. I had 8 of 12 symptoms, and it was the only disease or disorder that described me. The doctors did not think I had it because I was too strong, but what were the alternatives? I sank into depression and anxiety.
I ran the gambit of possibilities. How long do I last? Will it be a painful death? Will I make it three years? Will I suffer? I did not believe the doctors who said you are too strong because they were not giving me any alternatives. These were no solutions; just wait until it manifests itself.
I did not want to wait until it manifests itself. I wanted answers now. Who wants to wait until it manifests itself, and then they say, “Oh, you had PSP sorry. Now, you will die in a year or 2.” To me, that was pure craziness!
A few weeks ago, Cynthia (Smart Girl) found Functional Neurological Disorder (FND), and we studied upon it on various websites. I got an appointment with a doctor in Little Rock who understood FND. I found him on FNDhope.org. I made an appointment with Dr. Andrews.
I visited Dr. Andrews on Wednesday, July 8th. Dr. Andrews and I talked for an hour. He says, yes, you have Functional Neurological Disorder, and Dr. Andrews believes my right leg trauma with knee replacement, hip surgery, and replacement and blood clots with the extreme pain made FND activate. I was delighted when he said you are too strong for PSP, and since Mayo and Vanderbilt have eliminated all possible physical symptoms, it has to be FND. I went from a disorder with a death sentence to a disorder you can learn to live with through training.
You must learn what triggers your disorder or attacks so you can react to the triggers better. Also, you need to learn how to reset the triggers to get back to normal as quickly as possible. Here is a laundry list of things that I need to do to help myself:
• Keep exercising • Keep doing yoga • Keep eating a healthy diet • Learn Cognitive Behavioral Therapy (CBT) • Learn Dialectical Behavioral Therapy (DBT) • Simplify your life • Keep it simple • Learn triggers • Avoid triggers • Minimize triggers • Learn resets – stutter or unable to speak than sing a song and can not walk forwards then walk backwards • Beware if you disliked something before disorder, then you hate it now.
Here are some examples of what I disliked before, and I now hate:
• I was not too fond of crowds, so crowds activate my symptoms. • I did not like liars. Now, I hate liars. • I did not like injustice? I despise injustice. • I was intolerant of emotional hot-air rhetoric. I wouldn’t say I like rhetoric. • I do not like drawn-out stories. Now, I have no patience for a long story. • I do not enjoy genealogy (stuff with past). Wow, I guess it is a huge trigger.
These triggers can set me off to be rude, angry, or go to rage. Big problem!! I have always been feisty, argumentative, fiery, but it is a new uncontrollable level.
I have to learn to deactivate these triggers and not to let them bother me. I hope CBT and DBT give me the tools to do that.
Does anyone know any resets for triggers or a good list of reboots like singing a song for stutter and walk backwards to reset unable to step forward?
Smart Girl has improved my life three times in the past two years. I am grateful for her help by reducing my anxiety, solving my leg pain issues, and identifying a possible explanation for my ongoing illness.
I recognize Smart Girl (Cynthia), and her daughter pulled me out of the pit of despair, allowing me to see there is hope, and there is a great deal of life to experience. They encouraged me to keep my journey going and do not give up. Cynthia and Elizabeth (EB) are the best friends anyone can ever possess. We experienced life together traveling many places, building sandcastles, attending an Arkansas football game, watching movies and cartoons, playing chess, building Legos, reading books, doing homework, eating breakfast, lunch or dinner, walking Sweetie Pie, taking and picking EB up to school and playing all types of sports including swimming, catching the ball, throwing the ball, swinging the bat, striking golf balls, shooting basketballs, rolling bowling balls, throwing darts, bicycling, walking, and laser tag. We had a great time, and I never thought I would experience life like that again. Thank you.
Smart Girl worked for Patterson Physical Therapy, and she identified and correcting the problems with my right leg. I went from constant step by step pain every minute of the day. My pain varied from hardly any pain to pain all the time. Patterson Physical Therapy identified my hip to heel ratio was out ten percent, and I was walking sideways. A few shoe inserts and I had instant pain relief. I want to thank them for solving the problem when many doctors, physical therapists, and chiropractors could not over five years. When you are not in constant pain, you can enjoy life, and you can experience it so much more.
In June 2020, Smart Girl presented Functional Neurological Disorder (FND) as a potential identification of my ongoing illness. No one has diagnosed me with this disorder, but it is a better option than PSP. When I read the information that she sent me, it described me perfectly. I did a blog about FNA.
I wrote this poem over a year ago, and it is in my book. I think very highly of Smart Girl, and I am publishing what she has done for me in my blog. I appreciate her dedication to my health. Thank you.
Smart Girl
I recognized your smart
And very astute
It grabbed my heart
And I started the pursuit
You are very pretty
So adorable
Witty
Certainly not ignorable
Your appearance is striking
Blue eyes mesmerizing
Gazing at you and never tiring
So so energizing
I did not know what to expect
Wondering if I could ask
Could we connect
It would be a mighty task
You have a daughter
Live with your parents
We are moving through white water
But you are not embarrassed
You do not text
Are very independent
What comes next
Certainly not dependence
A single mother
Living life
Facing challenges one after another
Needing a Swiss army knife
Sometimes overwhelmed
Sometimes quite well
Certainly compelled
Not to walk on eggshells
What do I see
What do I believe
Do not disagree
Or deceive
Celebrate she is special
Celebrate her resolve
Give her a medal
Watch her evolve
You are unique
A mystery
A good deal of mystique
But you have lived a real life history
So many illnesses
So many miseries
So many sicknesses
So many memories
It makes me seek you more
You are so strong
It could be a love affair
But more two friends traveling along
I like you
You are so fresh
How do I pursue
So we mesh
Patience is good
Do not smother
Wait, in all likelihood
We will find each other
Friends
Buddies
Our relationship will pay dividends
It will be very sunny
A warming experience
Soothing to our bones
Reducing the weariness
Eliminating the groans
It makes me smile
It makes me laugh
Worthwhile
I cannot wait for the next paragraph
