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Author Topic: How has your family been dealing with this whole process?  (Read 50652 times)

Dragon Fly

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Re: How has your family been dealing with this whole process?
« Reply #15 on: November 17, 2010, 01:41:54 pm »
Oh Dee. That story makes me kind of sick. It really is the epitome of "the system" at its finest.
>;<
"And those who were seen dancing were thought to be insane by those who could not hear the music." --  Friedrich Nietzsche

deloyd777

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Re: How has your family been dealing with this whole process?
« Reply #16 on: November 17, 2010, 06:30:19 pm »
"Since you're in college, you have to be working at least half-time to get food stamps." What sense did that make?!?! I cried and cried, but the rules were the rules.""

Dee, that makes about as much sense as the new health care program (PCIP) for people with pre-existing conditions. You MUST be totally uninsured for 6 months before you can qualify HUH?

 So if somebody's COBRA runs out, or they are on a government assistance program (because they cannot get private insurance with pre-existing conditions) they must risk no insurance. Gee, I thought getting everyone insured was sort of the whole focus of health care reform??? 8000 people nationwide qualified. What a joke
http://www.healthcare.gov/news/factsheets/pre-existing_condition_insurance_enrollment.html

"Rules are for stupid people who can't make up their mind" --Dr House

justpls

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Re: How has your family been dealing with this whole process?
« Reply #17 on: November 17, 2010, 07:29:50 pm »
Yep, my best friend of 21 years at first was abhorred that I would ever even consider it. "Can't we get a little creative about what you could do?" I was stunned. But, I get it. I do. It's really hard to distinguish "giving up" because you want to and "giving in" because you have to...>;<




I love the way you said that, Dragon Fly - it is so true!

Pat


Dragon Fly

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Re: How has your family been dealing with this whole process?
« Reply #18 on: November 17, 2010, 07:36:22 pm »
deloyd777.......I'm going to have to investigate that PCIP...shows how much my head has been in the sand this past year about all things current events. I dare not let me insurance go, for fear of being uninsurable. Yet, at the same time, my individual plan costs $500 a month...but covers NOTHING!!!! What's a fly to do?? I just might be willing to go 6 months without insurance if there wasn't another surgery lurking off in the near future. Booooo.

JustPLS--ain't it the truth! :D

>;<
"And those who were seen dancing were thought to be insane by those who could not hear the music." --  Friedrich Nietzsche

deloyd777

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Re: How has your family been dealing with this whole process?
« Reply #19 on: November 18, 2010, 05:31:42 am »
Dragon Fly, it is a new program that just started up I believe in June or July this year, as part of heath care reform
https://www.pcip.gov/

 As I understand it, it is federally funded but state managed, sort of like Medicaid is. So you are better off following the links to your state program.

 Iowa was one of the 1st states to get it up and running. I'm not sure all states even have it going yet. When I called the Iowa program, they seemed very confused. Like the program was initiated before anyone in Human Services was even fully trained or could answer questions. One person there even said it is way under funded

 One response I did get was that in most cases, it would not cost any less than most private COBRA programs. And like that link said, 8000 people nationwide have signed up and qualified, out of what, 40 million uninsured. It doesn't hurt to check into. But don't get too excited.
 

Dragon Fly

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Re: How has your family been dealing with this whole process?
« Reply #20 on: November 18, 2010, 11:36:40 am »
I was half joking...because I had the unfortunate pleasure of calling around to other health plans this week. I had been avoiding it for months, because, I'm embarrassed to say, I've kind of become afraid of my own shadow. So I was afraid to even think of changing my insurance, signing new papers, etc. Uhhh well that fear disappeared rather quickly as I was told NO, NO, and NO from the other companies. And then "Keep the insurance you have at all costs. That is about as good as you're going to get."
 :'(
Damaged goods....................
.......................
 :'(
.............................okay..........
.....I'm over it!  :) ;) :D ;D 8) :P
>;<
"And those who were seen dancing were thought to be insane by those who could not hear the music." --  Friedrich Nietzsche

Eurydice

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Re: How has your family been dealing with this whole process?
« Reply #21 on: November 18, 2010, 12:10:24 pm »
The pre-existing insurance plans being developed by the states may eventually be promising, yes? Has anyone had any experience with these?

deloyd777

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Re: How has your family been dealing with this whole process?
« Reply #22 on: November 18, 2010, 03:19:36 pm »
Eurydice. My only experience has been my state was one of the first to get it underway. One reason is our 2 Senators have been in the Senate since the Revolution and have high positions on 2 key Senate committees. Sen Harkin is Chairman of HELP (Health Education Labor and Pensions), Sen Grassley is ranking member of Senate Finance Committee.

 I think most states are still in the process of implementing it. From what I understand, it is more like a private group insurance where you pay a monthly premium, co-pay, and deductible. It's not so much a supplement or assistance program like Medicaid, as it is a group plan but without the ridiculous extra costs private insurance charges, id they even offer it.

 If anyone is interested, you can call the Capitol switchboard during business hours (202-225-3121) and ask for those committees. The committees are where all of these programs, and changes to existing ones, start. You can give them opinions, ask questions, get info directly from them. I believe the Senate Finance Committee is looking at Medicare reform right now.

Sam

 

Eurydice

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Re: How has your family been dealing with this whole process?
« Reply #23 on: November 18, 2010, 07:01:14 pm »
Fantastic information, Sam, a big help. Thanks so much!

Trajector Media

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Re: How has your family been dealing with this whole process?
« Reply #24 on: November 18, 2010, 07:18:50 pm »
Marci, you have no idea. Now that I'm home all the time, these folks pester me to no end. My Sisters and Brother-In-Laws somehow have the impression I am interested in their personal affairs. My kid and Daughter-In-Law think I've opened a new dare care center. Friends and neighbors apparently mistakenly believe I'm lonely and need their constant companionship.

 God I miss the peace and serenity my good ole truck used to offer me :-(



You know it's funny you mention that because it is SO TRUE.  People think you have a life of luxury because you get to stay home all day while they have to work.  They call you for all kinds of favors they couldn't possibly do because they "have to work".  It's amazing how truly clueless your family and friends can be. 

Thanks for sharing the numbers and info on health care as well, it is appreciated.
Marci
I speak from experience not expertise.

Trajector Media

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Re: How has your family been dealing with this whole process?
« Reply #25 on: November 18, 2010, 07:21:32 pm »
SUPERSTAR your words-Find NEW support instead of looking towards those that could never understand what we are going through.- was the answer ive been looking for.My girlfriend thinks its ok to make jokes about my condition and the fact that i see a psychiatrist to her friends and family, wish cuases me great embarrassment and humiliation. I finally told her it was very hurtful and degrading for her to do this to me,and that if i win my benefits i am moving out,if i dont win, im still moving out,men's shelter if need be.No support,no compassion,no heart i can not deal with anymore. Thnx for letting me vent, i feel much better and calmer. :)

dolphinfan,
     How are things going?  I read your post and it really broke my heart.  It is sad to hear that the person you cared so deeply about has such insensitivity to what you are going through.  No one should ever make jokes about things like that and most definitely not your girlfriend.  I think you are making a wise choice about getting as far away as possible from her.  You deserve much better.
Marci
I speak from experience not expertise.

se0269

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Re: How has your family been dealing with this whole process?
« Reply #26 on: November 18, 2010, 09:17:38 pm »
I can't remember who made the song and its not funny. Does anyone remember the song "All by Myself?" That's really what the disability shuffle is all about for me. Family and friends start out supportive in the beginning, but in the long run a claimant is all by themself. It is virtually impossible to have family or friends with patience of needing things from the during the average of 2 years in most places and if I am not mistaken there have been cases in my area going way past 4 years. In the long run phone calls don't get returned and you begin to notice that people treat you differently when you are disabled. The very same individuals that have disappeared from your life start coming back around once they think your claim is near the end. There are friends and family I try not to ask for anything from them, because the only thing worse that the friends and family that have deserted a  claimant are the friends and family that will always say yes and jeopardise their household. The only good thing about going down the long winding road of dealing with the SSA is you learn who your true friends are and you find out which family members truly love you unconditionally.

Dragon Fly

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Re: How has your family been dealing with this whole process?
« Reply #27 on: November 18, 2010, 11:53:15 pm »
I can see what you're saying. A lot of people were "interested" in my injuries when they thought I was going to collect a fat check from the bus company. Now that I'm just applying for SSDI it's like..."Oh. Really?" Change of subject.
 ::)
Alllllllll Bbbbyyyyyy MMMMmyyyysseeelllllfffffff.....
Rallen you are now responsible for that song being stuck in my head all night long.
>;<

"And those who were seen dancing were thought to be insane by those who could not hear the music." --  Friedrich Nietzsche

Kittyholic

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Re: How has your family been dealing with this whole process?
« Reply #28 on: November 19, 2010, 05:01:39 am »
My heart breaks when I hear how disability has affected so many of you – changed relationships with friends and family. Feeling alone.  I can’t imagine what it would be like to go through this without constant support and understanding. I know it is hardly fair, but would you all mind if I shared a positive story?

I’ve been more fortunate in terms of friends and family, but some of that is because of my lifestyle before disability. Since I traveled with my job, and lived in several different states, my friends have always been long distance – only getting together when business took me to their town. We communicated by phone and email, so my disability didn’t change that. Of course, since I no longer travel, the occasional dinners no longer happen, but many of them have made special trips to visit me; and my family now plans annual trips here, since it is too difficult for me to make the annual visit to see them.
 
I have lived in my current location for 11 years now, and my 2 closest friends are 50 and 60 miles away. We get together about every 4-6 months, but other than that, we stay in touch by phone and email as well. I live in the country at the dead-end of a dead-end road with only six homes in close proximity. My neighbors are wonderful. Knowing I can’t drive and my husband now works an impossible schedule, they will check with me before going to the store to see if there is anything I need.

The biggest blessing has been my husband. I’ve often said that if it took a disability to bring him into my life, then I’m grateful for the disability. In 2005 we found each other again after 32 years. We lived on opposite coasts, but talked and emailed daily. Since I couldn’t travel, he made several trips to visit me. Then, in 2006 when my condition took a turn for the worse, he didn’t hesitate to quit his job, pack up his home and move east to take care of me.

Six months later we were married – a big surprise to friends and family. I was always alone, but never lonely. I preferred my solitude, and no one thought I would ever remarry. Quite frankly, I didn’t believe I would either. I had a sanitized house that resembled a model home – a place where no one actually lived. My house is now a home! He has filled it with comfortable and delightful accoutrements. Everyone that visits feels immediately at home, and they all adore him – because he takes such good care of me, and does it with joy.

So, I’ve been lucky. Since friends and family were not near before my disability, there is no change in our relationship. And, it was the disability that actually brought my husband to me. There are not many people in this world that would change their entire life to take care of another person. Every day I’m grateful for that rare person who chose to take care of me.

I’ll end with an exchange between Mom and I the first time my parents met Hubby. Hubby and Dad had gone for a drive, and Mom and I were sitting on the porch, when out of the blue she leaned across the table and very seriously stated:

Mom: “That Hubby! He just adores you!”

Me: “So what are you saying, Mom? I’m not adorable?”

Mom: “No, not that at all. I always thought you deserved a man like him. I just didn’t think any still existed”.

Me: “Yeah, I finally found a Dad”

Mom: “Oh no dear, your Father has never been that adoring”


« Last Edit: November 19, 2010, 05:22:52 am by plgerrard »
The best way to pay for a lovely moment is to enjoy it. (Richard Bach)

se0269

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Re: How has your family been dealing with this whole process?
« Reply #29 on: November 19, 2010, 01:09:57 pm »
Pati, You were truly blessed. It's amazing that when life bottoms out, there is someone that is not family actually helps. I have found that most people are cheer leaders giving a claimant a atta boy instead of actually giving a hand. Your story is both inspiring and positive. What you have shared gives hope and inspiration to the many. Be good.