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Archive for EPILEPSY

Where Have I been?

Journey Behind the Falls at Niagara ...

 

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

COTTON MOUTH

Jay Jewels Cry FOR HUMANITYDry 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!

Cross Over

Old Fabric by RiveroflifelisajoyCross 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

Wonderful!

nature-meets-construction-by-riveroflifelisajoy-number-two-scan.jpgWonderful 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 26,–Medical Emergency possibly due to the Video Game System! Oh, Why this Now?

LIFE STARTS HERE.jpgMy 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

5:00 in the Morning during A Snow Storm Medical Emergency just before the Holidays!

LIFE STARTS HERE.jpgI 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