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Old 10-18-2002, 06:35 AM   #1
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Join Date: Oct 2002
Location: Stratford, NJ, USA
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MissingRay HB User
Unhappy The Story of Ray.....

For all who wanted to know....this is my story of Ray.

It all began back in 1995 when I was pregnant with our daughter, Colleen Rae. How excited Ray was but always disappointed when I got my ultrasounds done. For some reason the lights in the ultrasound room would make Ray black-out, so he would never go in. We never thought much of it. From 1995 to 2000, Ray always complained of certain lights and blacking-out. "Maybe you need glasses?", I used to think. Whoever would have thought that Ray was showing signs of epilepsy?

In January of 2000, Ray woke up one morning and had a severe grand mal seizure. He was in the hospital for three days. All tests came back normal. "We don't know why Ray is having seizures", said one neurologist from the hospital.

From January 2000 to January 2002, after hundreds of doctor appointments, ambulance rides, emergency room visits, hospital stays, changing medications, Ray's seizures got progressively worse. Some doctors' would not even treat Ray because he did not have health insurance. After getting doctors' notes stating that Ray could not work due to uncontrollable grand mal seizures, again and again, Ray was turned down for Medicaid which is a state funded insurance for disabled people. It finally got to the point that Ray would be in the hospital at least three to four days out of the week. "I'd rather have cancer than to go through this", Ray had once said.

A couple days before Ray's death he ran out of one of his medications, which helped little with his seizures. Ray called his doctor and tried to make a doctor's appointment and also get his prescription refilled. His doctor refused to see him because he had a balance with the doctor's office. After that, we found Ray another doctor but the new doctor couldn't see him for another week. I took Ray up to a local hospital to get his prescription refilled. Since it was a valium that needed to be refilled the hospital said that, by law, they can only give him 10 pills which would only last him five days. "What about the other two days?", Ray and I both thought. "You'll be okay Ray. It's only two days", I told him.

The first day that Ray was without his medication he had a severe grand mal seizure in his bed when nobody was around and suffocated in his pillow. I still cannot comprehend how something like this can happen to somebody so young, so innocent and so wonderful. Ray loved life, Ray loved his daughter but Ray did not love being sick. He told me a day before his death "I'm going to die from this." And I said to him "Ray, you're not going to die from this. You have your whole life ahead of you." Maybe Ray knew that it was his time? Maybe Ray was trying to tell me goodbye?


I also wrote a poem about Ray and what happened on that day:

It was Thursday, January 31, 2002,
I was sitting in work not having a clue.
Wonder where Ray is, why didn’t he call,
Is he having a seizure and hurt from a fall?
I picked up the phone and dialed his number,
He said he was having convulsions in clusters.

“Don’t call the ambulance, I’ll be alright,”
“I just didn’t get much sleep lastnight.”
“I just took my medicine so I’ll be okay,”
“It’s just another ordinary day.”

After an hour I got kind of worried,
I picked up the phone and called Ray in a hurry.
“Bridgette, I need you to come right away,”
“I am having none stop seizures today.”

“You’ll be okay Ray, I will call your mom,”
“Don’t get upset, please just stay calm.”

An hour later my phone started to ring,
The EMT’s said it’s a very bad thing.
They could not get Ray to start breathing again,
“We think that he suffocated in his own bed.”

My precious Ray, why did you leave me now?
I have to tell Colleen but I just don’t know how.
“You’re daddy’s in heaven my darling Colleen,”
“Daddy was the strongest man that I ever did see.”

He suffered from seizures for nearly two years,
He told God to please take away all his fears.
Although I am gone don’t cry, don’t you see?
No more seizures I’ll have, no more epilepsy.


Bridgette

------------------
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.

[This message has been edited by MissingRay (edited 10-18-2002).]
__________________
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
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Old 10-18-2002, 08:55 AM   #2
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Join Date: Oct 2002
Location: Hayward, WI , USA
Posts: 23
Abelle HB User
Post

The health care system in this country is absolutely terrible. Doctors don't LISTEN to their patients. MY boyfriend, after his complex partials were getting worse, finally got an appointment with our regular physician after I screamed and hollered. After listening to Patrick's story and symptoms he told him he wanted to send him to a Psychiatrist. a SHRINK!! Patrick had to agree to see a shrink before our doctor would make him an appointment with a Nuero. Patrick also begged the doctor for Depakote (which he had been on before when his seizures started in his teens) and finally the doctor gave in. The Depakote helps him and THANK GOD because the earliest he can get in to see a nuero is JANUARY. I can't believe people can let someone sit home and suffer with seizures for three months in good conscience. I cannot believe that when you tell your physician in good faith that you have a seizure he thinks you are full of crap and wants to send you to a shrink. How pompous does a medical degree make a person? How godlike do they feel to make the decisions that they do, irregardless to their patient's lives and quality of life?

I understand your pain, and I find it such a shame that more people didn't reach out to help Ray and to give him the care that he needed. I hope that they people that fell short in his case and time of need were made aware of their actions, and how they played into the unfortunate outcome.

My thoughts and blessings are with you and your daughter...thank you for telling your story.

------------------
"Life is what happens
while you're making
other plans"~John
Lennon
__________________
"Life is what happens
while you're making
other plans"~John
Lennon

 
Old 10-18-2002, 10:08 AM   #3
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Join Date: Oct 2002
Location: Stratford, NJ, USA
Posts: 53
MissingRay HB User
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Abelle,

I know what you mean about doctors. Anymore, doctors just make me sick. Ray's doctors' were informed of his death and so was Social Security, because they turned Ray down also. And Medicaid was informed also. Social Security and Medicaid both knew that they screwed up because they paid a portion of the funeral expenses.

Bridgette

------------------
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.
__________________
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
Old 10-18-2002, 09:32 PM   #4
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Join Date: May 2002
Location: Ohio
Posts: 92
Beth's Mom HB User
Unhappy

Bridgette,
I find your story so sad.
Our daughter was deprived of oxygen at birth due to a doctor's neglect, but I have learned to take the lion's share of responsibility with doctor's since then...I hope others will also.
I am reminded of my older brother having a staff infection after triple bypass open heart surgery and the doctor told my sister-in-law that it was her fault as she should have asked for a different med...she laid into him and told him that she was a patient as much as her husband...then she asked for the head of the hospital and my brother was taken by ambulance to the best hospital in the state which I believe saved his life.
11 years ago our neurologist put our daughter on Felbatol...when it hit the news on tv that patients were being taken off the drug we were frantic...our neuro was on vacation and when he came back I told him that he had not been there for me when he truly needed to be...he agreed with me and helped me all the more.

My gnecologist is now a little woman from the Phillipines whom I admire beyond words. I was upset and crying the last appointment as I was upset and she gave me a hug. She takes all her patients in her office and talks to you until you feel that you understand...how often do you get that treatment?

Our son hopes to be a doctor. I told him above all he needs to be compassionate and truly put himself in the other person's shoes.

I am sorry for your loss but feel that the more others hear of the tragedy that took your boyfriend's life, the more people who might benefit. Thank you for sharing his story. I feel most certain he is in heaven with God and at peace.

Marilyn...Beth's Mom

 
Old 10-21-2002, 05:29 AM   #5
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Location: Stratford, NJ, USA
Posts: 53
MissingRay HB User
Post

Marylyn,

It sounds like you have some really good doctors. I wish more doctors could be like that....to listen, to care and really want to help. I'm glad to hear that your doctors do that. That's how it should be. And thank you for your condolences.

Take care,
Bridgette

------------------
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.
__________________
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
Old 10-22-2002, 08:05 AM   #6
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Join Date: Sep 2002
Posts: 127
lazoo HB User
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Missing Ray - may I ask what Ray liked to eat and drink, as I feel what we consume has so much to do with what goes on in our bodies. Also, I would like to recommend a book to you called Embraced by the Light. Someone left this book at our home at the funeral of one of my relatives. I lost my father, sister, little brother, and brother in law, one year right after the other. This book will fill you with a total sense of peace.

 
Old 10-22-2002, 08:18 AM   #7
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Join Date: Oct 2002
Location: Stratford, NJ, USA
Posts: 53
MissingRay HB User
Post

Well....when Ray was in his teens he like to eat basically anything. He ate the normal stuff like chicken, steak, salads and he usually drank soda, ice tea, milkshakes......

When his seizures started he would eat nothing that had salt in it and only drank water or sprite because sprite had no caffeine.

Thanks for the name of the book. I'll look for it the next time I'm at the book store. I'm sorry to hear about your family. I know that must have been and still is very rough for you.

Thanks,
Bridgette

------------------
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.
__________________
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
Old 11-05-2002, 04:19 PM   #8
CindiBlueyz
Guest
 
Posts: n/a
Post

Hi Bridgette,

Glad to see you posting here! I just wanted to encourage you to keep posting Ray's story! I learned a lot from your posts, and always appreciated them.
I've been registered here, but rarely post.

I will try to introduce myself here, soon!
Everyone seems friendly and interested in helping each other, which is great.

Take care,
Cindi

[This message has been edited by moderator2 (edited 11-05-2002).]

 
Old 11-06-2002, 05:45 AM   #9
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Join Date: Oct 2002
Location: Stratford, NJ, USA
Posts: 53
MissingRay HB User
Post

Hi Cindy,

I'm glad you have learned alot from my posts.

I hope to hear more from you soon

Bridgette
__________________
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
Old 11-13-2002, 10:07 AM   #10
Member
 
Join Date: Oct 2002
Location: Stratford, NJ, USA
Posts: 53
MissingRay HB User
Post

bump
__________________
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
Old 11-22-2002, 07:58 AM   #11
Member
 
Join Date: Oct 2002
Location: Stratford, NJ, USA
Posts: 53
MissingRay HB User
Post



------------------
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.
__________________
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
Old 12-06-2002, 01:50 PM   #12
Member
 
Join Date: Oct 2002
Location: Stratford, NJ, USA
Posts: 53
MissingRay HB User
Post

http://www.healthboards.com/ubb/heart.gif

------------------
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.
__________________
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
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