Debbie's Place

A Patient's Point of View

Category: Brain Injury (page 2 of 20)

Thanks For Our Special Teachers

Thanks for making us feel genuinely greeted each and every day,
Thanks for having patience and never making us feel in your way.
Thanks from your students that may not be able to write, hear or speak,
Thanks for meeting our special challenges daily and week to week.
Thanks on the days that our progress may seem like its going extra slow,
Thanks for accepting that we have challenges most people won’t ever know.
Thanks for helping us with our life skills it is much more than a good deed,
Thanks for being our special teacher your time with us helps us to succeed.
Thanks for always continuing to give us your welcoming and genuine smile,
Thanks for not seeming to mind if learning and doing things takes us a while.
Thanks for working and studying with us in your own special way every day,
Thanks for realizing we all have individual needs and for guiding us our own way.
Thanks for being our mentor too and working hard to be a teacher such as you,
Thanks and you need to know our families are also grateful for everything you do.

Clonazapam Detox Update

Dear friends, I have now been detoxing off my last pharmaceutical medicine Clonazapam (Klonopin). Two years ago I tried and failed to come off this medication. I ran into trouble trying to reduce my last 2 mg. I am thrilled to share that I have successfully made the cut from 2 mg to 1 mg for the very first time! I had two days of mild breakthrough seizures and that was all! All my other withdrawal symptoms were much milder than any detox in my medical history! I had been told by my doctors that the long history of Klonopin use had changed the structure of my brain. I was told I would never be able to successfully come off of this medicine! I am thankful to share that medical cannabis has made this last detox possible! This makes my pharmaceutical medication reduction from 44 per pills to 1 a day in 6 years and counting down! Miracles really do happen with cannabis use!

Ode to the Brain Monster

 

Thanks to medical cannabis I no longer live the gruesome tale of the dreaded brain monster, my term for uncontrolled epilepsy. The brain monster rides piggyback in the recesses of a few chosen brains. It is unclear in most cases how he makes his selection, but the result is always the same. The brain monster is comparable to the worst nightmare of a sleeping child. His size is a little unclear, but he seems massive. His shape is a little hazy, but over-whelming is the word that came to mind. His face, though never very clearly seen by anyone, is most often described as cruel and wearing a smirk across his greedy lips. The brain monster is likened to a shadow because he goes with his chosen everywhere they go.

The brain monster used to be present every time I lay down to go to sleep and was still present at the break of each new day. He used to attend all my social functions and was also present during all my peaceful moments of solitude. He was once ever present and his existence could never be totally ignored. Thanks to medical cannabis I can ignore his existence and go days without giving him a second thought!

Once the brain monster comes to live within a brain, he is stubborn, he resists strongly all attempts at evacuation. Some call him a symptom, some call him a curse. Some call him the brain monster. The main treatment for the brain monster is to somehow keep him calm and sleeping. While he is lying dormant and undisturbed he is much less likely to cause pain and suffering to those of us he has inhabited. It is said that he is to be tip-toed around, cautiously, respectfully, suspiciously. It is sometimes very difficult to find a medicine that will keep him under control.

When he is out of control there are no words quite descriptive enough and no analogy that can exemplify the powerful range of emotions and damage he does to those of us he has inhabited. It is said that the brain monster can be felt stretching and yawning as he starts to awaken. As the brain monster starts to stir, the brain sends signals of warning to the rest of the body. The warning may be felt as the stirring of fear, or may be felt as just a slight tingling or numbness on one side of the body. The warning may be a drop in level of consciousness, or just a brief staring spell. Whatever the warning take care and heed, because it means the brain monster is no longer asleep. Some call this warning an aura, others refer to it as their personal gateway to hell on earth. This monster sometimes becomes all to familiar because he wakes up time and time again. His destruction is felt by far too many. He attacks little precious children, he causes parents many a torturous sleep-less night. He is responsible for immeasurable loss of independence. He has taken many a driver’s license away. The brain monster has caused many qualified workers loss of meaningful employment, loss of confidence, loss, loss, loss. Beware of the brain monster he does not discriminate. I learned that he can waltz in unexpected without warning and without a known cause anytime and inhabit anyone.

I finally experienced that with multiple seizures types resistant to any type of treatment, medical cannabis was what gave me my first and only relief and reprieve from the ominous threat of the brain monster!

 

BI Awareness and the Techno Age

Dear friends, I have been sharing brain injury
awareness for over two decades. If we really
look around and listen to fellow survivors we
should all eventually realize one humbling
truth! We really live among a world of miracles!
We are an amazing and miraculous brother and
sisterhood. Please give yourself credit for what
you are truly surviving! My first BI awareness
and education website was twenty years ago.
I have been waiting for technology to catch up
with what should finally make brain injury easily
for ALL of society to understand! There really is
NO excuse for this technology dependent society
not to understand and feel compassion for brain
injury survivors. In the height of technology there
is no excuse for people not to comprehend the
importance of our mysterious and amazing BRAINS!
It is our bodies only COMPUTER! Our brain injury put
insurmountable difficulties on our precious computers!
It makes me smile when I think about all the people that
FREAK out if any of their computerized gadgets get a glitch!
They panic if they hear it can’t be fixed by tomorrow! Imagine
if they realized they may have to deal with these glitches long term.

This is the best BI analogy I have been able to come up with in
27 years of trying hard!

Wizards in Heaven

 

We’ve all had wizards,
They helped us to better see.
We’ve all had wizards,
That helped guide us when we wanted to flee.
We’ve all had wizards,
They helped turn us around in this life.
We’ve all had wizards,
They guided us when we were full of pain, hurt and strife.
We’ve all had wizards,
They helped us keep our balance when we were thrown off base,
We’ve all had wizards,
They helped us up when we were running low on hope and faith.
We’ve all had wizards,
They were all especially entrusted to guide each of us.
We’ve all had wizards,
There guidance was our learned wisdom and trust.
We’ve all had wizards,
They encouraged us to go forward no matter what.
We’ve all had wizards,
They helped guide us on which life doors to open or shut.
We’ve all had wizards,
They can even whisper down to us from heaven.
We’ve all had wizards,
They are the few that were our lighthouses and our sun.
We’ve all had wizards,
They were the ones we naturally gravitated to.
We’ve all had wizards,
They helped intervene when we did not have a clue.
We’ve all had wizards,
They were the ones we felt had answers that were right.
We’ve all had wizards,
They were the ones that gave us the strength to continue to fight.
We’ve all had wizards,
They were the wise ones and their opinions truly mattered.
We have all had wizards,
When they are lifted up to heaven we miss them so very much.
We’ve all had wizards,
Their presence stays with us and when we listen we can feel their loving touch!

 

Hope is Magic

Hope…is the opposite of despair.
Hope…is the opposite of impossible.
Hope…is not a gift, it cannot be given.
Hope…is not tangible, it cannot be stolen.
Hope…is the determination to fight back.
Hope…is a life raft to any person drowning.
Hope…is the desire to overcome the odds.
Hope…is the opposite of discouragement.
Hope…is a dry place to sleep for the homeless.
Hope…is peace for those that live in war zones.
Hope…is oxygen to a person struggling for breathe.
Hope…is medical cannabis for all patient’s in need.
Hope…is food for those that are hungry and starving.
Hope…is going forward, no matter how much it hurts.
Hope…is a friend that loves and cares unconditionally.
Hope…is the appeal process for the man on death row.
Hope…is the expectation that things will indeed get better.
Hope…is a ray of sunshine, after any devastating life storm.
Hope…is a letter from family for the soldier away from home.
Hope…is belief and faith in yourself, above all others on earth.
Hope…is something we receive from within our heart and soul.
Hope…is what carries us, when we believe we are too tired to go on.
Hope…is not something than can be bought for any amount of money.
Hope…is striving to be as successful as possible, no matter what our circumstances.
Hope…is magic in an otherwise very harsh world!

Seizure Relief

 

I can feel myself leaving,
I just never know exactly where I am to go.
The seizure monster takes me on an unwanted furlough,
and apparently no one else is allowed to follow.
I can feel myself leaving,
no matter how hard I try to stay tough and macho.
The seizure monster catches me like a scared little doe.
I can feel myself leaving,
I can feel myself going deep down and below.
I can feel that old familiar feeling of sorrow.
I can feel myself getting very, very slow,
this is when I can identify I am caught in the seizure crossbow.
I can feel myself leaving.
I feel my breathe as it gets more and more shallow.
I feel seizure relief once I feel your presence and my head on a pillow.

 

All In a Brain Injury

We have memory problems.
We have concentration difficulties.
We have sensory deficits like blurred vision,
ringing in the ears or a bad taste in our mouths.

We can have loss of sensation and feeling.
We can have headaches.
Many of us have loss of balance.
We can have light sensitivity.
We can also have noise sensitivity.
We tend to have mood changes.
We tend to become depressed or anxious.

We may have chronic fatigue.
We may have sleep disorders.
We may be confused.
We may have speech and hearing deficits.
We may lose judgement and reasoning abilities.
We may stay angry a very long time.

We are usually not sure who or what we are angry about.
The truth is we do not know ourselves anymore!
We are usually the last to know or realize the extent of our injuries.
Many of us also have PTSD.
Others of us have seizures.
Please, if you see our symptoms, help get us the help we need.

We need support, encouragement and hope.
We need faith that we
can overcome our many deficits.
We need immense understanding as we lost “ourselves.”
It is difficult to again find our way.
Our futures are full of unknowns and extremely hard work.

We are like a brand new person, starting all over again.
None of us wanted to start all over again.
We may be resistant and we may deny, deny and deny.
We need nurturing and we need guidance to again find our way.
We are unique in every way.
What the brain is able to again do
will astound even those that do not believe in miracles.
We are survivors in a special league.

Many of us had experienced loss of family and loved ones prior to brain injury.
These loses were heart breaking and hard to accept.
They did not prepare us for the total and complete loss we have felt
as a result of our “loss of self!”

We are brothers and sisters
as a result of the uniqueness of our loss.
We believe we are the only ones
that can truly understand the magnitude of our loss.
Together we are stronger,
and we learn tips that help us move forward.

Please be kind and patient with us.
If you have not experienced loss of self
it is very hard to comprehend.
Please just sympathize and empathize with our loss.

We are a group that has a tendency to far surpass anyone’s expectations or dreams.
We are the “ultimate survivors” in every sense of our existence.
We were chosen and are all an honor and a blessing to know!

Date With Fate

Fate has no respect for the golden rule.
Fate can be quick, quiet and quite cruel.
We did not get to choose the time or date.
We didn’t get a warning about our date with fate.
We were all negatively impacted by the fate gate.
We never imagined loss could be quite this great.
We did not choose any of this extra harsh life weight.
Fate does not discriminate it gets many all can be bait.
Fate can also be a new beginning or a brand new dawn.
We don’t have to let fate control us like we are its pawn.
We can make a choice to reach out and help others that bled.
Fate touched our life and many of us know we should be dead.
Fate gave us a chance to be thankful for the little things instead.
Fate gave us another chance to live, laugh, love and share daily bread.

Debbie Wilson

We Can Choose

We can choose to just sit and stare,
We can choose to wallow in our despair.
We can choose to focus on how life isn’t fair,
We can choose to isolate and forever live in solitaire.
We can also choose to be kind and fair,
We can choose happiness if we were to dare.
We can choose to be a friend and reach out and care,
We can also choose to again breathe in gulps of fresh air.
We can also choose to find contentment again, somewhere.
We can choose for joy to be continual rather than just rare,
We can always choose to live life to our fullest if we just dare.
We can also choose to be kind and fair,
We can choose happiness if we were to dare.
We can choose to be a friend and reach out and care,
We can also choose to again breathe in gulps of fresh air.
We can also choose to find contentment again, somewhere.
We can choose for joy to be continual rather than just rare,
We can always choose to live life to our fullest if we just dare.

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