Archive for EPILEPSY
July 3, 2008 at 9:48 am · Filed under amateur poetry and prose writing, being disabled and dependant, being strong willed and determined to over come lives p, Black Children, Black Family, Black History, Black Male Children and Poverty, black male teens, Children, Children of All Races, children with seizure/epilepsy, Coping with Emotional Pain of Tradegy, Coping with Seizure, EASING CHILDREN'S FEARS IN HOSPITAL STAY, EPILEPSY, Faith, Family in Crisis, Family Leave Act and Epilepsy/seizure, fear of being alone, fear of death and dying, Fear of the unknown, Health, health of black male teens, HOME ECONOMICS, PRESSURE OF SCHOOL WORK VS. SEIZURE ACTIVITY, Save the Children, Schneider Children Neurology Dept., SCHNIEDER CHILDREN'S HOSPITAL THERAPY DOG, SEIZURE DISORDER, SEIZURE DISORDER AND INHOSPITAL VIDEO EEG, Seizure disorders and musical comforts, SELF REFLECTION, Selfesteem, single parenting, THOUGHTS ABOUT LOVE BY BLACK TEENAGERS 2008, Trusting God for All things, Uncategorized, Views from Within and tagged: Children Safety, Illness in Teenagers ....seizures and their affects on, New Seizure episode and medications therapy, PRESSURE OF SCHOOL WORK VS. SEIZURE ACTIVITY, Schneider Children Neurology Dept., Schneider Children's Hospital N
I have been on a journey…
My friend
I have not been lost
intentionally
but a journey of length
and depth has
challenged my
very heart and soul
I have gathered need
and gathered sorrow
My journey leads me
down dark alleys
bright rooms,
painful thoughts
and haunting fears
Tears are worthless
here on my journey
But the tears still come
and roll down my cheeks
like snowballs gathering
size and speed
My nose and face feel clogged
from the emotions spent
on this journey
Come free me my friend
from this torment
But I do not cry for myself
I cry for another
My son, my dear son
What will be?
Sickness again claimed
him on June 24 after
his American History
Regents exam…of which he
did receive an 88!
The victory of his passing
is overshadowed by the
illness that gripped him in
its stealy hands
I wish for him joy,
health, and happines…
I pray for him health, health, and more health
So that has been my journey my friend
Seeking health and strength for
the child of my womb
The child I had prayed for 15 years ago
is in a battle for his life….
So my journey is not a lonely one
but a hard. brittle, prickly one
Where have I been? Right here,
at home, at work, but journey is a battle of
the mind and strength of the
spirit.
JOurney is to walk a walk of faith,
and endurance…
So I have not called you, written you,
but I know you are still there.
I will not go,
while I continue this journey, whose
destination I yet do not know.
-fini-
Riveroflifelisajoy
credit of waterfalls image…from aol journey images
April 2, 2008 at 11:31 am · Filed under Activities for Teens, All Race Families, amateur poetry and prose writing, and tradegy, Art, BAD BEDSIDE MANNER OF DOCTORS, being disabled and dependant, Black Children, Black Family, Black History, Black Male Children and Poverty, black male teens, Children, Children of All Races, children with seizure/epilepsy, Compassion for the Needy, Coping with Emotional Pain of Tradegy, Coping with Loss, Coping with Seizure, EPILEPSY, Faith, Family in Crisis, Family Leave Act and Epilepsy/seizure, fear of being alone, fear of death and dying, Fear of the unknown, Health, How Professional Mentors influence the Young, How to Respond to another's troubles, Insomnia, Leadership and Its Responsibility, Medical Crisis in the Family, PARENT AND CHILD ACTIVITIES TO BRING THE FAMILY TOGETHE, religion, Save the Children, SEIZURE DISORDER, Seizure Disorder and the Family Affects, SELF REFLECTION, single parenting, SLEEP AND HEALTH CONDITIONS, Thoughtless words, Uncategorized, Views from Within and tagged: Emotional Condition of a patient and family at medical, Fear of the unknown
Dry like the parchment of the
scroll of a writ
of so long ago
Thousands of years
hid away
Moments in the hands of
an anthropologist
crackling under his
sweaty palms
grasp
the dry old parchment
will melt away
if not put in sealed
archival containers
dry like the old linen dress
of yesteryear
like a ball of cottom in my mouth
the medical diagnosis
has come and gone
and now my sensations are
minimized
except for the diagnosis
pain that is ripping its’
way deep into my heart.
Trying to explain to my
child that he has to
take medication to save his
life.
Cotton mouth,
loss of taste for the
things you love.
Loss of sensation in my
feet and hands
Sitting I type not
feeling, not
wanting to feel the pain
deep searing a tunnel through
my stomach
I feel full,
gas overcomes my belly
cotton mouth
prevents me from
eating
like the fullness of
emptiness I hold
deep in my belly to
unfold until I scream from
pain and agony
Take the truth,
dealt the truth
no compassion
was the final blow
given
lost in a new
hell
fear of the unknown and
the diagonosis compells
the rickety fence of hell to
open and reveal the ominous
cavern that threatens to swallow
us whole
We must proceed my child
we must go in
Cotton mouth,
sweaty palms,
sweaty feet,
sudden compulsion to
release bodily fluids,
fight or flight sydrome
in full affect
compel me oh Lord
toward the light
Let taste return
Cotton Mouth–
I cannot swallow
for the diagnosis
itself is not paletable
The diagnosis was
given with such cold
precision like the blade
of the surgeons knife
Hold my hand my child
walk together we will
toward the tower of hell
but together we will
climb to heaven
despite the steely grasp of the Cotton mouth!
April 2, 2008 at 11:11 am · Filed under All Race Families, amateur poetry and prose writing, American History, and tradegy, Art, BAD BEDSIDE MANNER OF DOCTORS, being disabled and dependant, Black Children, Black Family, Black History, Black Male Children and Poverty, black male teens, Children, Children of All Races, children with seizure/epilepsy, EPILEPSY, Faith, Family in Crisis, Family Leave Act and Epilepsy/seizure, fear of being alone, fear of death and dying, Prose Poetry and tagged: Child Reaction to Doctors, Doctors Bedside Manner, Medical Diagnosis, Prescriptions and Their Side effects, prose poetry on coping with severe medical conditions, prose poetry on family in crisis, Prose Poetry on health
Cross Over and move out the way
Sometimes the river does not
sway, the tide is high and
my spirit is low
I do not want to look back
or let go
What do I say to my child
to day
His love of life has
been challenged,
like a dry twig broken
and chips of it splinter
and fall away
His health is limited
yet a picture of health
is he
So why this sad problem
that plagues me today
The doctor looks cool, and
medical team too serene
Your child has to take
xxxmiligrams and
that is all…
Have a nice day
Go forth, leave the
hospital and jump back
into the stream. river of life
and move on
after this limited 5 day
hospital stay
But wait, I have more questions,
What about the side affects….
“OH, he just might be a bit sleepy…that is all
any way…have a good day!
No, NO! I need to say this, I have to ask
that….do not dismiss me so easily
For I must fight for my child
I must question, and stay longer if
I must
For though you are the doctor…I cannot
entirely trust
for each patient has
different needs, and questions…so let us reason,
let us rationalize before we say our goodbyes!
So again I say dear Doctor
today—crossover from your generalized sermon, and
medical doctrine
Crossover to a parent who is human, and alive..
Because the condition of which you speak
is not simple to me
not simple to my child
just simple medical diagnosis to you
So please….cross over from the cold
cruel world of illness
disease
and speak
Woman to Woman, possibly Mother to Mother
please.
Fini
Riveroflifelisajoy
March 31, 2008 at 5:59 pm · Filed under All Race Families, amateur poetry and prose writing, and tradegy, Bias on the Job in regards to illness in the Family and, Black Children, Black Family, Black History, BLACK HISTORY WOMENS HEALTH, Black Male Children and Poverty, black male teens, Children, children with seizure/epilepsy, Compassion for the Needy, Coping with Death, Coping with Seizure, EPILEPSY, Family in Crisis, Family Leave Act and Epilepsy/seizure, Health, How to Respond to another's troubles, Human Rights Issues, Longlsland Jewish Hospital and Synder Children's Emerge, Medical Crisis in the Family, Schneider Children Neurology Dept., Seizure Disorder and the Family Affects, Selfishness, Thoughtless words and tagged: 15 year old seizure disorder, Coping with Death, Coping with Seizure, help to heal, how to give compassionate response, Schneider Children Hospital Neurology Department
Wonderful I said.
Yes, Just Wonderful!
The weather is bright,
The moon is just right……
Wonderful!
But yet—I cry.
Why me I said,
the child of mine lays
flat on the bed.
The sun is shining brightly outside
his bedroom window.
We were just getting ready to go home
And he became ill.
Wonderful, I had said,
Marvelous, Great Fantastic
I thought and then
he was prone
attacked by a seizure.
“I Need Help! I Need Help! I NEED HELP! I NEED HELP!
Was all I could say
I wanted to wail,
and scream and
drive that evil away!
I can’t watch, I can’t see
the Evil wretch which
threatened and attacked
my fifteen yearold baby!
So what?…that he is fifteen….does it matter?
If your husband, or wife take ill….does it
matter that he or she is 50 years old? or 35 years old?
Sickness, disease….NEVER come at the right time!
Death does not live in a life of reason
or ryhme….So please do not
ask me, or chide me and say….HOW OLD IS YOUR SON?
For when he lay prone against the hospital bed, and nothing left
to be said—-Look at him with love, look at him
with compassion…..for your family, your friends could be
sick tomorrow or the
day after…..just pray for me today
Don’t say, Well, he IS 15!
Well, a lady whose husband passed away at the age of 45 from a massive
heart attack was older….and the loss is deep, and troubling nonetheless…..–Remember Jack Ritter who died from a Massive Heart tear?— from
Three’s Company Fame?—Everyone Cared…and Cried
all the same!
Just offer a hand or a hug of compassion,
and a gentle breeze of concern….
Do not dismiss my challenge with
How Old is he? Even if he were age 18—-he still would need MY help!
Yes, he is still my child….
So yes, Wonderful!
It truly is Wonderful…when people can be responsive in a most
pleaseant way.
Why don’t you try that approach
today?
P.S.
THANKYOU SYNDER CHILDREN’S HOSPITAL @ LongIsland Jewish for helping my son—No matter what his Age!
FINI!
—-Riveroflifelisajoy
December 27, 2007 at 5:06 pm · Filed under Black Children, Black Male Children and Poverty, Elementary Religious Schools, EPILEPSY, Faith, food, recreation, painting pictures for hobbies, sing, Health, Lutheran Religious Schools, Middle Class Dilema, Poverty in America, Save the Children, SEIZURE DISORDER, Shakely Food Supplements, single parenting, SLEEP AND HEALTH CONDITIONS, Tennis, Video Games and Seizures/Eplilepsy and tagged: Black Male teenagers and Heath concerns, Cardiac conditions and Sports related illnesses, Ems Techs, Epilepsy and Sports, Home for the Holidays and sick too!, Legend of Zelda Nintendo WII, Seizures and Video Games, Singleparenting and the Sick Child, SLEEP DISORDERS, Synder Children's Hospital
My son Daniel was talking to his grandmother in her room. I was making her something to eat. Her room is right behind the kitchen.
She said, “Come here, Come here, ” in a too calm voice. “Come and get him, he does not look well.”
I had that chaotic, shaky, feeling in my gut again. The same if not worse from last weekend when Daniel got “sick” in his sleep at 5:00 am.
Now it was only about 9pm the day after Christmas and I saw him standing and holding his head.
I rushed to his side and he grabbed hold of my arm. I steadied him and then I could do nothing but get him to the wall where he could lean.
I tried to make him lay on my mother’s bed but he could not move his legs.
He is taller than me ….so I had to be careful that he not fall and hit his head.
My mother could see his face….she said…Ha, oh…watch out….he is going to throw up! He threw up all over the floor in my mothers room.
He closed his eyes and lay limp on my shoulder like a wet rag….I could pick up his arms and there appeared to be no resistance or strength. I could hear gurgling in his throat.
I held his head back and I started talking to him. Daniel, Daniel…do you hear Mommy?
I thought that he would start shaking or something….but then I heard the gurgling again and he threw up again. He had just eaten a broiled chicken sandwich.
I was cooking sweet potatoes with sugar and cinnamon on the stove. But right now I hoped it was not burning because I could not move.
My mother was asking me if I wanted to put him on the chair. I said no….it was a wooden kitchen chair. He needed a secure chair.
The dining room and living-room where he had set up “camp” under the Christmas Tree with all of his gifts—especially the Ninetendo WII were in the living room.
That is what he had been doing for about 2 hours before this episode. He had gone food shopping with me.
We had really gone out to go get his replacement Legend of Zelda Game for the WII because the one he had gotten for Christmas was defective.
That was all he could think about for the whole day of Christmas. So for him…Christmas had really only started two hours ago once he started playing the replacement no defect Legend of Zelda game.
So what went wrong NOW???!!!!! Why was I standing trapped here in my mother’s room…unable to get to the telephone AGAIN???!!!
and — holding my son up against the wall while he was throwing up over my shoulder?
His arms limp as two dish rags; he was not talking… just weak, and vomiting and spitting!
My mother, with all of her age of 78 had worked in Creedmoor Hospital back in the 1960’s as a attendant….was calm and just asking what she could do to help.
She can not walk…due to arthritis. I started praying and talking to my son. I sang a hym.
I prayed (and) recited Psalm 23 and waited for him to come back to me and my mother. My son Daniel spit and threw up again.
Finally I felt some life come back into his body. Funny though, his heart was pounding, and pounding.
It was a good strong beat!
I talked to him continously and asked him his name, and then he began to talk words…but the words did not make any sense. He knew his name, but when I asked him how old he was he spelled his last name instead.
I walked him to the living room and had him to lay down. He saw me reach for the telephone and then he began to tell me to “Wait, a–wait don’t do that—wait!
He does not want to go to the hospital…I told him I have to call for help—he got visibly upset. He kept looking at the video game he had left on just before he became “sick.”
By the time the EMS arrived he was talking regular and making sense.
They, the EMS techs explained that the video games and even the computer have 60 shots of light every few seconds and that is why he is getting sick.
They checked his blood pressure and other vitals. He seemed fine. But looked over tired (they said from playing those games.)
They got clearance for him to see his doctor today and not have to go to the hospital….but with a promise from him to put away the video games and go directly to bed….eat something, drink something but go to sleep immediately!
UGH! Lord, help my kid and help all other parents going through this nightmare.
My kid was in private school all his life. I sacrificed my pension to nine years of private school education.
Now he is in a college board highschool with only 300 kids. He loves it!
My son ranks 44 in a thousand kids from the Youth and Tennis of SoutEast Queens. He just played tennis on Friday, Saturday and Sunday! If you saw him he does not look sick…He is quite athletic….
I am a poor woman…..I can barely put food on the table.
I pray that my son’s health improves.
I hope it is only the video game systems and the 60 shots of light and nothing else.
He is only 14 and has not yet lived his life.
I hope this blog gives inspiration to others out there who may be experiencing the same thing.
I am going to get in touch with a Shakley Food Supplement distributor. My mother gave them to me because of different medical problems when I was just graduating highschool and starting college.
They really helped. I had lost track of that food supplement company….but I will actively seek them out now.
This is not an advertisement….it is my personal opinion. I will not give my son anything UNTIL I TALK TO HIS DOCTOR. —-PLEASE BLOGGERS….DO NOT TAKE ANY TYPE OF VITAMIN OR FOOD SUPPLEMENT UNTIL YOU CONSULT YOUR DOCTOR. I WILL BE TALKING TO MY SON’S DOCTOR TO DAY ABOUT VITAMINS AND FOOD SUPPLIMENTS…..YOU MUST ALWAYS CONSULT, CONSULT, CONSULT AND GET SECOND AND THIRD AND FOURTH OPINIONS ABOUT YOUR MEDICAL HEALTH AND NEEDS!!!!!!
Because I know my son is a picky eater…and he does expend alot of energy to play tennis and do school work.
He also is putting alot of energy into the video games. All though the kids appear to be couch potatoes…they are expending energy into concentration.
That is where the danger appears to lay with the 60 points of light flashing into the eyes and affecting the brain.
What to do what to do? My kid appears to be hooked to the games. But guess what?
The male EMS Tech guy said that he is hooked to the games too!
Lord save us ALL!!!!
Watch your child and the video games please….. !!!!!!
Take care….till next blog…..
RIVEROFLIFELISAJOY
December 26, 2007 at 3:16 pm · Filed under BAD BEDSIDE MANNER OF DOCTORS, Black Children, Black Family, Black History, Black Male Children and Poverty, EPILEPSY, Faith, Health, MALPRACTICE, NORTHSHOREMANHASSET PEDIATRIC EMERGENCY ROOM, SEIZURE DISORDER, Shakely Food Supplements, single parenting, SLEEP AND HEALTH CONDITIONS, Video Games and Seizures/Eplilepsy and tagged: Black Family SEIZURE DISORDER, MEDICAL EMERGENCY AND NORTHSHOREMANHASSET HOSPITAL, SLEEP DISORDERS, SYNDER CHILDREN HOSPITAL
I sleep on the kitchen floor. I sleep on a mat with pillows, and a blanket on the kitchen floor. I am watching over my mother at night while she sleeps on her ten inch thick mattress from Sealy Posterpedic.
She had a stroke some years ago. But my concern is regarding her arthritis and waking up and needing assistance. I have a ten inch thick mattress too. But it is upstairs in my bedroom. So I sleep down stairs for the sake of my mother in case she needs me.
But one night recently I awoke with a start! I heard a screach, or scream or some sort of ungodly howl that sent shivers up and down my spine. You see, I sleep very light because I am the watchman in the night for my family. I used to have dogs, and the watching was their job…but I can not have pets anymore….so my sleep is very, very, very light.
I heard that screach and howl and I somehow flew to my feet and ran into the dinning room and found my child on the floor shaking and jerking. Daniel! Daniel! Mommy’s here! Daniel! Daniel! Mommy is here!
I tried to turn him on his side but he was very stiff. His eyes were wide open, but turned to the side and beet red. He did not hear me. I wanted to call for help. My mother heard the uproar and asked what was happening!
I told her that Daniel was having a seizure. It appeared that he was on the computer and was possibly sitting up in the dinning room chair and had fallen off the chair to the floor. He missed hitting the computer, and the china cabinet thank God.
This was a bad one. I was shaking internally, and I wanted to call 911. I was counting the minutes of how long this seizure was lasting. and praying that it would not go into stasis. (a non stop seizure which can be life threatening).
I watched him and prayed that this evil internal assault on my child of 14 years old would soon stop. It did. He closed his eyes and I ran up stairs to get the phone line adjusted.
You see I can not afford the expensive computer set up for the Internet like other people. I have the AOL phone jack. My son appeared to have been on the computer Internet and so I had to put the phone back on.
His bedroom has the phone jack in it so I had to go into his darkened room to fix the telephone line. The light bulb needed to be replaced in the ceiling. I had told him to replace the bulb the other day and he did not do it to my dismay!
I could not get the phone to work once I had fumbled around in the dark. I ran back down stairs and then banged on my landlords door. She came up and gave me her cell phone. I dialed 911! My son opened his eyes and sat up on the dining room chair and put his head in his hands.
I ran to the kitchen and dragged my mat, blanket and pillow to the dining room. I commanded my son to lay down and rest. He looked at me in a clueless way but listened to me.
He lay down. I continued to talk to him and he went into a sleep. I had to run to the restroom. I had been feeling sick myself but from more regular reasons, PMS. Ugh! Why does everything go wrong at the wrong time?
I wanted to stay by my child’s side…but instead I had to run to the toilet and tend to my own stupid needs! I was so angry with my body! I went back to my son and checked him. He was still sleeping soundly.
I went to the window and looked out and saw two EMS trucks approaching. It was bad weather too. 5:00 in the morning! Snow and slush was all over the place and the wind was blowing badly. The bare winterized tree limbs were straining against the wind.
I dreaded the next few hours of leaving the house in this bad weather, following the ambulance to the hospital, and answering questions that were asked by doctors and nurses.
Watching over my son and worrying about my mother and how she would feel knowing that her grandson had to be taken to the hosptial at 5:00a.m. in the morning! But for now I just opened the door. Three EMS techs came in.
My son was still asleep as they approached him. When they spoke to him he awoke with a start. He seemed dazed, but he knew where he was. They took him to the hospital and I followed behind in my car.
Since he was stable it would be easier to get him home. I talked to my mother and told her I would be back later. I left her with some breakfast food and then left.
The EMS techs warned me about the hazardous driving conditions. They were so nice…one of them actually helped me down the rather steep steps to the house.
When I arrived at the hospital I found my son and a doctor was talking to him. She was young, possibly in her mid thirties. She was a bit snippy too. She kept repeating herself that she wanted to get the story straight.
She was annoyed with my son because he had answered her incorrectly. I was beginning to get annoyed too….but at her not my son. I kind of gave her a stiff reply and then added a bit more to the response than she expected.
She then left the room and a more pleasant doctor came in and developed a good a rapport with me and my son. “Who wants to go the hospital at 5:00a.m.– during a snow storm!
My son had just had a seizure and was not able to express himself clearly. This doctor was better in his response. The otber doctor seemed not to have the right attitude at all.
She had stated that she was getting off of work at 6:00 and needed to leave so she needed the entire story! I was still upset about what had brought me to the hospital in the first place and I was not up to fighting with her at that time.
But looking back, I realize that she had been quite rude and not really as concerned with my son’s health as she was with the time she would be leaving work. The hospital I am talking about is NorthShoreManhasset.
I always liked the treatment my son received there. But for some reason this doctor was quite rude and had little or no compassion on my son who is still a minor (below the age of eighteen).
He did not committ any crime. He had had a seizure. So why was she not compassionate? Look, this is the real world….people do not care.
Some people do care…but most do not. Doctor or not, medical conditions are all they (some) care about. Generally I have found that North Shore Manhassett hospital would help my child….I was glad when this woman (Doctor) left my son’s side.
He was tired and not able to answer the questions clearly. She was impatient. We went through a series of questions that seemed to make no difference. I tried to explain his condition and all she cared about was getting out of that room.
Finally a new doctor arrived and then they did chest xrays, checked the heart and decided to have him see a cardiologist and Synder Children’s Hospital the next day.
The next day we went to all of the doctors that we were supposed to see. My son missed school, I missed work. I was worried about my job….but my child’s health does come first.
I have no body to help me —so off we went from one doctor (specialist) to another. The second day we went to see his pediatrician, who reprimanded my son for staying up so late.
He believed that my son had fallen asleep in the chair and fell off and then had the seizure. I cannot say what was the trigger….but it was Saturday night and my son was being a typical teenager.
I try not to baby him, but I see I have to monitor his hours of sleep….even if he does not particularly like it.
This blog is for those who have experienced this medical condition and want to know that you are not alone! My son is still going through medical testing.
So I just keep a close watch on him and my mother. I still sleep in the kitchen on the floor on my mat. (I constantly mop and clean and wax my floors so not to worry), and my son must go to bed atleast before 1AM.
Health conditions are made worse by lack of sleep and over extending the body.
Till next blog:
RIVEROFLIFELISAJOY