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
Family
Do you enjoy
Your family
Or is it a ploy
Or an anomaly
A ploy to get money
A ploy to get affection
A ploy to be funny
A ploy for connection
A connection to what
A connection to who
A connection in my gut
A connection made of glue
Join us together
Fasten us to each other
A common tether
Mother or brother
Is this common
Is this normal
Is this unusual
Is this irregular
No it is not
For many to live
Relatives not forgot
Families to thriveWhat is the common thread
Families to proceed
Is it the homestead
Or blood of a family creed
A creed to love
A creed to support
A creed to encourage
A creed to equally share
Generation to generation
Forgive one another
Give for the duration
Smother and smother
Smother with love
Smother with kindness
Smother with resources
Smother with mercy
Mercy is the hardest
When we feel wronged
But we can harness
By remembering we belonged
Belonged to a family line
Belonged to a congregation
Belonged to the vine
Belonged to a narration
A narration to work together
A narration to read
A narration to learn
A narration to believe
Believe in God
Believe in kin
Believe all are flawed
Believe we all sin
Sin is there
Every single day
Repent with prayer
Believe and pray
God is first
Family second
Our nation third
And there is no fourth
Align on one
Read the one
Learn the one
Worship the one
Forgive those in two
Love those in two
Show mercy to those in two
Share with those in two
Honor those in three
Respect those in three
Support those in three
Affirm those in three
Teach yours these
Time and time again
These are the keys
Our family will remain
I have struggled for years, and I have searched for tools to help me live better. I want tools to help me learn what triggers my symptoms and how to reset the triggers as quickly as possible.
I have had ongoing issues for years, and no physical defects can be found beyond repaired damage to knee and hips along with blood clots. I have fallen backward; my neck hurts, my head hurts, my eyes get stressed, my head goes blank, my body wobbles, and many other little nuisances. No one has given me solutions to these issues except to drug me up and to make me into a zombie. I don’t particularly appreciate living this way. If anything, this lifestyle drives anxiety and depression, which activates, compounds, and exaggerated my issues.
The diagnosis of Functional Neurological Disorder (FND) opens new avenues to explore, including Cognitive behavior Theory and Dialectical behavior therapy (DBT). I am exploring these two tools, and I am seeking counselors to help me learn these tools and to apply them to my life.
Cognitive behavior therapy (CBT) is based on several core principles, including:
1. Psychological problems are based, in part, on faulty or unhelpful ways of thinking.
2. Psychological problems are based, in part, on learned patterns of unhelpful behavior.
3. People suffering from psychological problems can learn better ways of coping with them, thereby relieving their symptoms and becoming more effective in their lives.
Dialectical behavior therapy (DBT) is a type of cognitive-behavioral therapy. Its main goals are to teach people how to live in the moment, develop healthy ways to cope with stress, regulate their emotions, and improve their relationships with others.
I plan to write more about my journey, trying to understand these tools and how they are working to make my life better. I will add posts about other tools that I use to help, including breathing exercises, writing, exercising, and yoga—also, a post here and there about God and his provision for me. These tools and exercises do not compete with God. To me, they are the fruit of God’s existence.
I hope they may help you if you have sprouts of anxiety or depression.
Have any of you had any experiences with CBT or DBT? Did it help?
Adore
What is adore
How do we get there
Not a story of lore
But let me share
Starts as a nightingale
A crush on a caregiver
A common tale
To someone who can deliver
Smart Girl worked hard
To analyze me
Another patient on her dance card
She is my significant key
She found I walk funny
She sent me to a specialist
She was so sunny
She was excellent
I found her smart
I found her pretty
I found her a piece of art
I found her witty
Yes they fixed my pain
My leg quit hurting
Adverting the ball and chain
Now my interest was flirting
I asked her out
Once or twice
A difficult route
But worth the price
Took weeks and weeks
To win her over
Through valleys and peaks
She was a rover
A single mother
She has medical challenges
No men and does not want another
Just wants to keep her life in balance
I was not deterred
I was smitten
I was stirred
I needed to fit in
I met her needs
Little acts of kindness
Many small deeds
Growing our fondness
We talked and talked
We played and played
We shared and shared
We gave and gave
Life took off
We lived mightily
Enjoying life from a trough
We were a family
We ate dinner together
We walked the dog
We attended school events
We went on trips
She improved my condition
Reducing my stress
Eliminating my strange emission
Making my symptoms much less
Our lives proceeded
For a long period of time
Warning signs were unheeded
We had reached our prime
She had to choose
Old life or new
Two different views
Which one is true
I did not help
Wanting my way
All ended in a yelp
And a fray
I was frustrated
She was smothered
All issues debated
She was mothered
She was safe
She was secure
She was loved
She was dandy
No reason to change
No reason to move
No reason to exchange
No reason to improve
Our lives deteriorated
Too hard to maintain
I was patient and waited
Living through the strain
Talk and talk
Going to transform
Waiting out the clock
And get through the storm
I needed her
She nurtured me
I wanted her
She understood me
But it was not to be
Our love did not last
We lost our glee
Our lives were in the past
No new memories
No new adventures
No new experiences
No new experiments
My heart was broken
I was incredibly sad
She had spoken
Again a nomad
On my own
Living life
Life alone
No community strife
Just circumstances
Circumstances of anxiousness
Circumstances of nervousness
Circumstances of restiveness
This went on for a while
A routine of existence
Peaceful in exile
Not much resistance
The text came
For us to unite
Back in the game
Everything alright
We had not changed
Back to our truths
Nothing rearranged
Back to our youths
Playing ball
Going to pool
Watching movies
Holding hands
We had missed some days
We had not seen each other
We had made it through the haze
We had ended the pother
Smart Girl found a disorder
Sounding like my quirks
Almost like a hoarder
Of crazy weird works
I was diagnosed with it
How exciting and fresh
But it fit
I keep my pound of flesh
No death sentence
How grand
Learn tools of repentance
Tools to manage my land
Land of coziness
Land of familiarity
Land of closeness
Land of comradeliness
Journey back to the word
Adore worship admire
Love esteem honor preferred
My heart on fire
Unexpectantly
Our lives interrupted
Our future and destiny
Everything disrupted
Disrupted our utopia
Where do we go
Entering dystopia
We will not grow
Back to the same place
A prison of sorts
Not our own space
Our life distorts
Too many chiefs
Too many frustrations
Too many rules
Too many debates
We are a couple
It is up to us
Not very supple
Just more fuss
Hard enough with one
But two or three
Along with intentional shun
We will not be free
I want to respect
I want to admire
I want to cherish
I want to honor
I want to get along
I want to go with the flow
I want to be strong
I want to be in the show
But it has to be her and me
Our lives and decisions
We must unify and agree
To enjoy our visions
I gave up hope
Thinking it was done
Walking the tightrope
No life in the long run
She had made her choice
Months ago
I heard her voice
I was useless cargo
I was expendable
I was a throwaway
I was undefendable
I was a cliche
Moody
Crazy
Unstable
Wacky
Yes it is correct
I am not perfect
Last time I checked
But then she picked
She picked love
She picked romance
She picked affection
She picked one to kiss
She likes our playfulness
She likes our secureness
She likes our tenderness
She likes our togetherness
Adore is here
In all its glory
Shout and hear
Our great story
We have fun
And laugh
We have joy
And happiness
Adore is a journey
A road to travel
A grand tourney
Let us not unravel
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?
