10-30 TYLER AMPS-86/61+3.75/61+3.76/69+8.5/PMPS-70/72+2.25/84+4.25

Hey guys won't be on till later on today, having trouble with my dad who has dementia.
He lives with my sister. Will be down there all day.
It's a big mess, I have enough stress with my sick daughter who has RSD 15 years
and now my dad.

I am the only one who makes all the phone calls, my sister won't do it and my brother works all day besides that he's dumb and doesn't want to do squat
Be back later
 
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@JOJI and Kit

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Tyler's said thanks for the well wishes
Sorry I didn't look at anyone's threads yet, it's been a day from hell and it's not
over yet.
Long story , Talking to Medicaid today to see when the time comes where my sister
can't take care of him any longer and since he has more than 2000 in his bank account, he won't get the medicaid which you need to get into a nursing home.
You need both Medicare which he has nd Medicaid and under 2000 to get into a place.

I said to the lady well what happens , do we throw him out on the street.
She said he has to spend that money in the bank on himself and of course have
receipts for everything

They will go back 5 years on his bank account.
Well what if he took out 5000 and went to Atlantic City Casinos and blew it all, what do they want a note from the dam Casino saying he was there and lost
all his money!!!!

Or what if he went to the bank and took money out and we don't know what he did with it, he's got freaking dementia, maybe he lost it.

Jesus they really make it hard.
I was so pissed I said I'll make him go buy expensive items and then return them and they do give you back the original receipt plus the return receipt.

I'll show them the receipt that he bought stuff
Then just hope the money for him .
It's just a big headache, everything is on me, I know my sister has had a hard time
with him living there , I understand that , but I do everything!!!!

I have a sick daughter for 16 years already who has 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
So between my daughter , 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.
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.
OK I'll stop, it looks like the only good news I have is about Tyler
Let's see how long that lasts
Again I'm sorry for the long rant. :bighug::bighug:
 
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Rant away Diane. Rant away. You know we care about you and your family, not only Tyler.:bighug:
Hi Deb, yes I know you all do and truly appreciate it.
I know if I really said how I felt about every thing going on I probably would
have been kicked off because of the language I would have used.
I have to admit I do curse a lot, can't help it, it's just the way I am, doesn't make
me a bad person, if I didn't curse at times, I'd probably put my hand thru
a window, I am one sick puppy.
This disease my daughter has us a real mother tucker , I'll put it that way lol
I probably should have been a truck driver lol

Thanks for listening Deb and have a good night.
Ashley is why I stay up so late because she's alone enough , so I try and stay up as long as I can to watch TV with her.
She will tell me Ma go to bed you do enough for me and Tyler, she's such a good daughter and a caring person, she would give you the shirt off her back.
The dam Center for Disease Control and the FDC don't do a thing for this disease, you bet your ass if they got it or a family member did you would see how fast they would bring more awareness to it and definitely funding to find a cure or at least
better treatments to help with the pain.

This may sound really cruel and awful and maybe some members here might think
badly of me but I do wish one of them gets this to feel what these poor people feel who have it.
Many people who have it have gone down to Washington to speak to them, even some doctors have gone with them and it was like talking to a brick wall.

I will probably burn in hell for the way I think but to see your daughter suffer and others who have it , you start to become bitter.
My daughters best friend also had this , she only lived 20 minutes from us. They met on a support group and hit it off immediately. They were the same age.
Her name was Jen and what a sweetheart she was.
I met with her mom at a diner and we had a nice talk.
Jen and Ashley never met in person because both of them were always
in so much pain, but me and her mom wanted them to see each other, even if it
was only for 15 minutes or so just to hug each othe
But it was too late. When Ashley didn't get her daily message from Jen she knew
something was wrong. They would message each other like 5 times a day.

Well a few days later Annie called me , she was Jen's mom and told me that Jen
took her life . I cried like a baby, I would also talk to her on messenger and got to know her very well.
I had to tell Ashley , she cried and cried all night.
This was 4 years ago. There went the only true friend Ashley had.
I still keep in touch with Jen's mom.
I really wish Ashley and Jen met.

I actually talked to a member on here who has it, I forgot who it was , but I'm going to try and find her name

Oh well so that's our life. Have a good night Deb ♥:bighug::bighug::cat:
@Deb & Wink
 
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Diane, You will definitely not burn in hell! To me, you sound like a saint. Ashley is lucky to have you for a Mom. She sounds like a wonderful young woman and I am so very sorry that life has handed her this rotten disease. I don't blame you one bit for any of the feelings you have or how much you swear. On top of it all your Dad and his dementia and dealing with the stupid rules. OMG. I'm thinking of you and Ashley and your Dad and Tyler too. Joji :bighug:
 
Diane, You will definitely not burn in hell! To me, you sound like a saint. Ashley is lucky to have you for a Mom. She sounds like a wonderful young woman and I am so very sorry that life has handed her this rotten disease. I don't blame you one bit for any of the feelings you have or how much you swear. On top of it all your Dad and his dementia and dealing with the stupid rules. OMG. I'm thinking of you and Ashley and your Dad and Tyler too. Joji :bighug:
Aww thank you Joji , believe me I'm not a saint lol, but thank you
Anyone in my position would do the same thing, gotta do what what I gotta do.
More phones calls on Monday, oh I can't wait lol
Thanks for your kind words, :bighug::bighug::bighug:
 
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