Diane Tyler's Mom GA
Member Since 2018
Hi guys , Tyler is doing great, he goes for his dental on 3-16
My daughter Ashley has been having a really rough time with the pain condition she has for 16 years right now. A very bad flare up.
I have posted about it in the past.
It's called Complex Regional Pain Syndrome
I found the post in case anyone wants to Google it
It's the most painful disease in medical history. It's actually known as the Suicide Disease, not kidding
No cure, no research , no funding, and no awareness.
I belong to many support groups and believe me you wouldn't believe how many of them committed suicide because they couldn't take the pain, the loniness, the depression any longer, both young and older people have taken their lives.
It's rated the on the McGill Pain Scale
It's called Complex Regional Pain Syndrome, or RSD
It's been around since the Civil War and they still haven't done squat about it
She's 35 , so lost all those years since she's 20 years old.
No boyfriend, , never get married or have kids,no friends they all abandoned her, no job , no anything.
She can't leave the house because of noise, the disease is mainly in her ears,
any noise is like an ice pick stabbing her in the ears, then it leads to the entire face, nose, eyes , neck.
It's nerve pain and feels like you are on fire.
So if neighbors cut their grass, leaf blowers we have to leave and either go to NY sisters or sit in the car.
Winter you have snow blowers, not fun having to leave when it's freezing out.
She also has it in her arms and legs, it spreads and also effects the organs.
I know people who have had it for 30 years.
When you read about it in the internet that doesn't even begin to tell you half if the
symptom get. Everyone is different.
But they all share one thing severe pain, isolation and depression.
Some doctors don't even know what it is, I have to educate them when she has a doctor appt, to tell them to talk low, be gentle with her.
It's just too much, so she is like a prisoner in jail, they have it better than people with
this dam disease.
Sorry for the big rant, just wanted to say if I'm not on sometimes or I don't reply
it's because of my daughter.
In all my life I would never think she would have a life like this.
It's dam heartbreaking
They will never find a cure or treatments that work, and we have tried them all,
Traveled to about 5 different states in the past.
Just wanted you to all know I didn't forget about any of you.
I have posted that my dad has Alzheimer's , he's in a wonderful nursing home .
Me, my sister and brother really checked the place out
It came on slowly, he does know exactly who we are , some days are better than others
We can finally visit now, My sister saw him first, then my brother.
I will go this Tuesday to visit. I haven't seen him since 10-6-20
He was in the hospital, had a mini stroke which I think made the Alzheimer's worse.
I'm so nervous to see him, I asked my sister how does he look.
She said he looks tired and older. He's 86
Only one visitor per week
I just feel I will get sick to my stomach when I see him
Never thought this would happen to him
He was a tough guy from Newark, N.J. and to see him like this just kills me
The place gives everyone a rapid covid test when you get there.
I talk to him every day and he can carry on a normal conversation with you.
Then other times a little confused.
One thing he never forgets to ask me is How is Ashley. He will say make sure you take care if her, that's all that's important.
He is like a father to her . She is just sick over this, she can't even cry because when she does
it causes her pain.
I have to say she is his favorite, maybe because she was the first grandchild.
Out if all the grandkids she always made things special for him, like his birthday.
She would bake him a cake, decorate our kitchen with balloons, and other birthday stuff
She is such a loving person, I can't even begin to tell you
She doesn't deserve this dam disease.!
My heart just breaks for her , I wish I could trade places with her and take all her pain away.
My husband died 13 years ago and my mom 12 years ago
So it was really just me, Ashley and my dad.
Well guys just wanted to tell you all of this in case I go missing in action at times.
I know you would all miss me lol lol
Sorry for the long post.
I checked in on all the kitties today and glad they are doing good.
Thanks for listening ♥
My daughter Ashley has been having a really rough time with the pain condition she has for 16 years right now. A very bad flare up.
I have posted about it in the past.
It's called Complex Regional Pain Syndrome
I found the post in case anyone wants to Google it
It's the most painful disease in medical history. It's actually known as the Suicide Disease, not kidding
No cure, no research , no funding, and no awareness.
I belong to many support groups and believe me you wouldn't believe how many of them committed suicide because they couldn't take the pain, the loniness, the depression any longer, both young and older people have taken their lives.
It's rated the on the McGill Pain Scale
It's called Complex Regional Pain Syndrome, or RSD
It's been around since the Civil War and they still haven't done squat about it
She's 35 , so lost all those years since she's 20 years old.
No boyfriend, , never get married or have kids,no friends they all abandoned her, no job , no anything.
She can't leave the house because of noise, the disease is mainly in her ears,
any noise is like an ice pick stabbing her in the ears, then it leads to the entire face, nose, eyes , neck.
It's nerve pain and feels like you are on fire.
So if neighbors cut their grass, leaf blowers we have to leave and either go to NY sisters or sit in the car.
Winter you have snow blowers, not fun having to leave when it's freezing out.
She also has it in her arms and legs, it spreads and also effects the organs.
I know people who have had it for 30 years.
When you read about it in the internet that doesn't even begin to tell you half if the
symptom get. Everyone is different.
But they all share one thing severe pain, isolation and depression.
Some doctors don't even know what it is, I have to educate them when she has a doctor appt, to tell them to talk low, be gentle with her.
It's just too much, so she is like a prisoner in jail, they have it better than people with
this dam disease.
Sorry for the big rant, just wanted to say if I'm not on sometimes or I don't reply
it's because of my daughter.
In all my life I would never think she would have a life like this.
It's dam heartbreaking
They will never find a cure or treatments that work, and we have tried them all,
Traveled to about 5 different states in the past.
Just wanted you to all know I didn't forget about any of you.
I have posted that my dad has Alzheimer's , he's in a wonderful nursing home .
Me, my sister and brother really checked the place out
It came on slowly, he does know exactly who we are , some days are better than others
We can finally visit now, My sister saw him first, then my brother.
I will go this Tuesday to visit. I haven't seen him since 10-6-20
He was in the hospital, had a mini stroke which I think made the Alzheimer's worse.
I'm so nervous to see him, I asked my sister how does he look.
She said he looks tired and older. He's 86
Only one visitor per week
I just feel I will get sick to my stomach when I see him
Never thought this would happen to him
He was a tough guy from Newark, N.J. and to see him like this just kills me
The place gives everyone a rapid covid test when you get there.
I talk to him every day and he can carry on a normal conversation with you.
Then other times a little confused.
One thing he never forgets to ask me is How is Ashley. He will say make sure you take care if her, that's all that's important.
He is like a father to her . She is just sick over this, she can't even cry because when she does
it causes her pain.
I have to say she is his favorite, maybe because she was the first grandchild.
Out if all the grandkids she always made things special for him, like his birthday.
She would bake him a cake, decorate our kitchen with balloons, and other birthday stuff
She is such a loving person, I can't even begin to tell you
She doesn't deserve this dam disease.!
My heart just breaks for her , I wish I could trade places with her and take all her pain away.
My husband died 13 years ago and my mom 12 years ago
So it was really just me, Ashley and my dad.
Well guys just wanted to tell you all of this in case I go missing in action at times.
I know you would all miss me lol lol
Sorry for the long post.
I checked in on all the kitties today and glad they are doing good.
Thanks for listening ♥
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