Does anyone know if they will raise my SSI checks for when I move? I mean the mortgage on the house will be double what we pay now, we will have increased monthly house insurance payment, water, garbage and a monthly gas bill now.
We knew it was going to put us at our limit, but I still need money for my meds and doctor visits and pay off doctors. Damn Medicaid still is not doing like it should!
I am asking because when I applied they asked for all the nessecary bills, water, garbage, insurance, mortgage and a few others. And they said they calculate all that into determining your payments a month.
I will call tomorrow and ask.
DUH!! No, of course not. Otherwise everyone would overextend themselves financially and expect the taxpayer to pick up the bills.That's kind of what I mean to kidlet.
Not that I'm not thrilled for you Joonie....I know how much you and your husband have been wanting a new home of your own instead of the trailer. But I think the finacial help from the government is meant to help you with living expenses...health care etx; not really mean to help you move up. I'm not sure I'm saying that right; but Kidlet's right.
If your assistance was increased everytime you moved to a more expensive home then there would be a lot less assistance there to go around to those that are in need.
I don't mean that to be offensive; just meaning that it's unlikely that it will increase.
SSI is based on income not expenses.
Are you kidding....?????? And they wonder why some people, such as I, are so skeptical of those persons who talk of their intent to apply for the disability program - because it is ABUSED. AND because it is abused, those who are rightfully entitled are shortchanged and challenged beyond comprehension.
Don't put joonie down, she is just asking a question. answer is no joonie it won't go up any with new home.
I was just asking... because they stated on my papers when I first got it, if I was to have a financal change either good or bad to report it within 15 days. I did not want to report it. I was just wondering if they are going to cut me off, because of the change. I do not want more money, I just want to keep my 1 a month I get now. That is all.
We are not getting a new house because we want to, we have to. You see we live on the same lot as the in-laws house, so if they sell to someone else we would have to move. We would have to pay 00+ to move the trailer, and then we would have to pay for a new septic tank which is not cheap either. There is only 2 options either get kicked out on the "street" or move into their house and take over payment. We still owe on the trailer and in-laws are going to pay that mortgage for us until we sale it.
My husband is a taxpayer, I am entitled to my SSI check, I paid taxes when I worked as well. The state does not even pay for my damn medicines like they are suppose to, so I am not getting much out of this being disabled and you taxpayers paying for it. Because the way I see it ya'll are only giving me 1 a month and some months no money.
Ya'll should try living in a single tralier with 3 other people, which is less than 700 sq ft of space. Yeah, and then depend on your husbands family to pay for your water bill, garbage bill, giving you a free place to put your trailer, so you do not have to live with them and sometimes pay for your meds and doctor visits.
Yeah, I am sorry I even asked a question, I read thru my papers to see if I had to report we were moving, I just wanted to know if they were going to take what little money I have to myself to pay for my meds and when something comes up.
Yeah, thanks... some of you are really "nice".
Oh I see why ya'll are saying that now... I just reread my post... damn laptop! It has been deleting some of what I type because my hand accidentally hits the touchpad and it causes the curser to move.
Oh well.... it was to say "decrease or raise".
But anyways...
[QUOTE=ari33]Are you kidding....?????? And they wonder why some people, such as I, are so skeptical of those persons who talk of their intent to apply for the disability program - because it is ABUSED. AND because it is abused, those who are rightfully entitled are shortchanged and challenged beyond comprehension.
[/QUOTE]
Uhhh... HELLO!! I go without cable, now paying .95 a month with a credit card is not much. My Tub of cheesecake filling is not it is . and I eat it as my snack for the 2 weeks.
I do not abuse anything. I have thought about giving up my SSI check, but then there are days like today where I had to fork over 2 for overdraft fees.
It is not like I use my medicaid, I cannot get it to work. I could have abused the system and gave up my primary insurance and had the state pay for everything on my medicial, but I did not. I even asked the SS person that took my application if I could and she said I could let my primary go. I kept it to keep medicaid from having to pay for all. They have yet to even pay anything on my medicial.
So, whatever. I am DISABLED! I cannot get my SSDI, because I do not have enough work credits, like 2-3 shy and it is hard to get SSDI when you are so young.
You can tell who has money on this board and who does not. But ya know... I hope none of you have to ever feel what it is like to be DISABLED before the age of 30 and not be able to work or make your own income and depend on greedy taxpayers to help you make it thru another month.
To some degree, Joonie, I genuinely feel sorry for you and yet it isn't anyone's fault but your own that you are in the position you're in. You obviously had children that you couldn't afford. And yes, those tubs of junk that you habitually brag about eating cost money that could be put to better use. In a recent post, you complained about being "over educated". Oh, I don't think so, at least to judge from your grammer and spelling. Now you are saying that you paid taxes when you worked. Really? How long did you work and how much did you pay into the system? Since you are now collecting 1 per month and will, plus yearly increases, collect that for the rest of your life, I'd say that you pretty much hit the lottery. It will surely be a lot more than you ever contributed.
I don't wish to be cruel but I get so tired of the 'entitlement' mentality. Be grateful for what you get from the tax payer. If you stop wasting money on trivialities, i.e junk food, you may just find that you can put a bit of money into savings.
[QUOTE=joonie]
Uhhh... HELLO!! I go without cable, now paying .95 a month with a credit card is not much. My Tub of cheesecake filling is not it is . and I eat it as my snack for the 2 weeks.
I do not abuse anything. I have thought about giving up my SSI check, but then there are days like today where I had to fork over 2 for overdraft fees.
You can tell who has money on this board and who does not. But ya know... I hope none of you have to ever feel what it is like to be DISABLED before the age of 30 and not be able to work or make your own income and depend on greedy taxpayers to help you make it thru another month.
[/QUOTE]I did not make this post to make anyone feel sorry for me. I do not need other cripples pitty. If I wanted pitty I would have went to a normie's board and posted a sob story there.
Oh I do not think I am entitled to it. I am just saying, my hubby works and pays in way more than I receive, my in-laws, my sister, my whole family works and pays into the system.
I waited 6 years to have my son, and at one point I did not want another child because I knew I would not physcially be able to take care of him. To tell you the truth we could not afford my daughter when she was born. In-laws helped us with stuff for her too.
It is just wrong to tell someone that they should not have a kid they might not be able to afford. I give up many of things so my kids do not have to go without. I even give up food.
98 cent peeps are not going to break the bank. I mean they only come around easter time for god sakes. I only buy one pack. HOw the hell else you think someone loses weight?! They give up junk food and food all together! Which I have.
I do not save my money I get for my SSI. I use that money to pay for my Humira, my monthly vitamins and my prednisone. It also pays for my daughter lunches .25 a day, and my doctor visits. a pop!
I just wanted a straight yes or no answer, not that I am abusing the system, because I am f**king DISABLED and trying to live a f**ked up life. I am sorry my life is not all peaches N cream like everyone else on this board.
Joey2 ummm... no like I said my in-laws, hubby, sister, brother, and my other sister both helped pay for those overdraft fees. And if I did not have the SSI check I would have asked one of them for the money so Wow! Some of you people are harsh. So Joonie bought a tub cheesecake goo... so freakin what, since when is any of your business how she spends her money??? Did she ask any of you to pay her bank fees? NO! Did she ask you to buy her another tub of goo? NO! All she did was ask a question. THAT IS WHAT THIS BOARD IS ALL ABOUT!!!Uhhh... HELLO!! I go without cable, now paying .95 a month with a credit card is not much. My Tub of cheesecake filling is not it is . and I eat it as my snack for the 2 weeks.
I do not abuse anything. I have thought about giving up my SSI check, but then there are days like today where I had to fork over 2 for overdraft fees.
You can tell who has money on this board and who does not. But ya know... I hope none of you have to ever feel what it is like to be DISABLED before the age of 30 and not be able to work or make your own income and depend on greedy taxpayers to help you make it thru another month.
[/QUOTE]
Poor thing, it must be hard going without cable.
Greedy taxpayers are paying your overdraft fees. Just be thankful those greedy taxpayers pay taxes or you wouldn't have a pot to pee in.
[/QUOTE]
Yeah it is hard to go without cable that is why we go up to the in-laws that live only 300 feet from us to watch their cable. And then that is why we have internet service that costs .95 a month, need something to do so we do not create anymore kids we cannot "afford".
I paddle myself off to work just so people like Joonie can sit on the internet all day and eat goo. If she hates the working taxpayers so much she should shuffle herself off like I do every day in pain. Just as she posts her details on a open forum, I can post my thoughts on an open forum. THAT IS WHAT THIS BOARD IS ALL ABOUT! Not long ago Joonie was talking about having another baby, that she could not afford. If you do not want comments back, don't post. LMAO! Anyone who knows me, knows I can and will not have another kid. I was being sarcastic when I mentioned that, and it was to the effect of to help me get rid of my JRA and go into preggo remission.Oh by the way with me "hitting the lottery" I think I am going to upgrade my ol tin box into a mansion, which should I pick... the nice luxurious kenmore refrige box or the luxurious Amana refrige box? Choices... choices.... NOT!Kenmore is a better brand! I dont think I have ever come across such a bunch of uncharitable, meanspirited ,sanctimonious individuals in my life. What anyone receiving assistance including[QUOTE=Rando121]Kenmore is a better brand![/QUOTE]
Oh what the heck, Rando! I have hit the lottery, I think I will go for the luxurious expensive Amana refrige box mansion! Woohoo! I am rolling in the dough now! Maybe next year I can build off my mansion with a 64" widescreen tv box!!
Look....I'm not trying to be mean; but I know it sounds harsh. I'm real sorry about that but all I've heard from you Joonie is how poor you and your husband are. Common sense would tell you if you can't afford the basic items in life and you now living in the trailer and need your Mother and Father in law to pay for your water and trash then how on earth do you think you and your husband are going to make it by moving into a place that cost twice as much as you are payng now? Are your In-Laws prepared to make your house payments when you come up short every month?
People talk about wanting so much more in life but then they make choices that keep them behind forever. In my opinion you and your husband will be taking a step back.....not forward by putting yourselves in this finacial bind. Yes; having a real home is the american dream. We all deserve it....but you have to make choices while your young that will get you to a place finacially so that you can afford it.
Choices. The ones you make today will shape your future.
And you can talk all you want about those here that have money; but I can assure you that the ones here that have money didn't get to where they are by luck.
Joonie it seems like you keep putting the cart before the horse. You should take all of the time you put into this board with kinda worthless stuf and try to figure a way to increase your income to help out your family.
Joonie does not have to justify her expenditures to anyone. She does not have a mean bone in her body so would it have been so difficult to have answered her question with a bit of kindness? What in the hell makes some of you so damn malicious?
[QUOTE=miles2go]She does not have a mean bone in her body [/QUOTE]
kelstev
I agree with miles2go. Joonie is not moving into a much better place. It's located on the same property as her parent's. It's kind of a no choice situation. They have to move there or not have a place to live. And the amount of money is a huge increase for her, but if you knew the real facts, you wouldn't think it was some gigantic leap.
Lovie, your words are usually so kind, but this once, I feel you are a bit off base. When you are living on the lowest amount possible, there's only so far you can stretch it. I've gotten to the point where I look at the dollar menu at Burger King as an expenditure that I'm never going to be able to afford any more.
I have no income and it's not because I don't want one or wasn't willing to for it. I worked to the point where I was permanently damaging my body, to the point where I am a step away from needing to go into a home. So, all of you who sit in your holy towers and cry out how she just needs to go to work, wake up!
A lot of people with RA respond well to the medications. They have pain, they have suffering, but they can still keep working. But some of us are not that lucky. We have to stop working. Joonie has had this illness all her life. Years of RA damage have crippled her. I don't udnerstand why you can't get a grip on that.
Are you so greedy as taxpayers that you really want the very sick to work no matter what their condition is? Shall I go to work on tons of painkillers? Will that satisfy you?
I didn't cause this illness. This illness happened to me and it happened to Joonie and to arriscolwell and her boyfriend has something I consider even worse. It is the system in this country that is so bad.
When did we stop caring for the sick in our country? I cannot believe that you are giving Joonie grief about having a sweet treat. How greedy and heartless you are? You have no idea what she has to sacrifice on in the meantime.
Did you have a cappocino or an ice cream cone this week? Or maybe you bought a candy bar out of a machine? Did you consider for one moment that this was an unreasonable purchase? I doubt it.
Yet, you jump all over Joonie for her little cheesecake treat.
She can't work. Get it through your heads. It isn't a choice for some people. She isn't abusing the system. The system is abusing her.
Joonie is a pretty open person and so she kind of likes to spill out random thoughts. This used to be a place where that kind of thing was accepted and enjoyed. I don't know what happened.
There are so many people that I've grown to care about here. I could name dozens of people that I enjoy keeping track of, that I pray about, I laugh and cry with. But lately, some of the things that have been said are making me just want to leave which I guess is the real purpose in the hearts of some people here.
It's already been made clear by some that you don't want to hear about how hard it is. You only want to hear from people that are responding well to their medications, that can keep working. Anyone that fails to do that had just better leave.
Do you realize what you are doing? You are trying to salve your own fears. You don't want to face the possibility that you might have to quit working some day, that the meds might fail you, that you might have to go through life with a chair or a walker. You don't want to think that you might be so bad off that a cheesecake treat is considered a grand treat.
But the reality of RA is that everyone is going to get worse. The meds only slow the progression and that's only if they work for you. No one wants to look at the ugly side of this disease. And maybe that's one reason we don't get much recognition for the plight we find ourselves in.
You cannot solve a problem until you admit there is a problem. RA is still a crippling, killing disease. You may be able to gloss over that possibility for a few more years and hopefully, they will find that cure. But some day, it's going to catch up to you. You don't expect a person with cancer to be blind to the possibilities. Yet, some people seem to think that if you don't talk about it, it won't happen.
It does happen. Ask Roxy, Crunchy, Joonie, Cassie, Pincushion...it happens. It is real. RA destroys our lives. We are all trying to rebuild the possibilities of our lives. But we need the support of each other to do it.
I never forget about the people that come here for some kind of comfort, any kind of comfort. AI used to be this place that was warm and inviting. I still see my friends here. But something has happened over the last few weeks that is just awful.
You are blaming Joonie for the misfortune of being born with JRA. You are blaming her for not being able to work. And Lovie, I used to work a really good job with a high rate of pay. Do you think I wanted to give that up? What, for permanent poverty?
Every day, I want to go to work. I dream about. I try and strategize a way I could do it. Then the tremors start and the pain starts. And I can't walk or cook or drive. I get tired from even being on here and have to quit.
But I keep trying to live. Only here, I thought I could find some support. That's what this place is supposed to be, people with the same illness helping each other cope with it. Instead, it seems to have turned into a two-side camp of those who have better health and money against those who don't.
I know what is like to be so poor. Joonie is not living beyond her means. She already does not have the means to make it. She is doing the best she can with what she has. Those of you who say, "just go get a job" haven't got a clue to what is like when you can't.
That is the same thing the government is telling us every day. "You can work." But I can't. I tried and tried and tried until my family begged me to stop because they didn't want me to die from the effort. Until my friends at work, including my boss, said it was time to stop. I miss working, creating, talking with friends, building dreams. Now, my life is made out of trying just to survive.
People ask me, the ones who are supposed to help, "what are you living on?" Nothing. I have no income. Nothing. Oh, I have income. I have food stamps and now I get medical care. But I can't afford toilet paper. My mom pays for my Internet so I can communicate, have some kind of support because I can't go anywhere. But there are those of you who think that this is a luxury. Yet, this is my lifeline to the world.
I guess for those of us who are unlucky enough, who didn't plan so well as to not have gotten as sick as the rest of you, that we shoudl crawl into our beds and not have any kind of life. I guess you might as well take the sunshine away because we obviously don't deserve that either. Or air, how about that? Am I taking up too much air?
What does Joonie have to do to satisfy you people? I think this has become a cruel world. I am really considering leaving this place which just breaks my heart because I feel like I'm leaving behind people who are really good too. So many of you have touched my heart deeply and I hope I have added something of value to your lives. But I can't deal with this harshness. I can't stand seeing my friends hurt by such thoughtless words.
How do I keep my friends without being crushed by those who think so highly of themselves that they must tear others down? It is a dilmena I can't resolve.
Joonie, hang in there. Don't let the cruelty of others drag you down. Arriscolwell, you keep fighting for you and Justin.
And those of you that have sat on your high walls looking down on us, the less fortunate, may God grace you with compassion, may He open your eyes and your hearts. But I don't know if that's going to happen. I wonder how many of you that have spoken so cruelly here lately go to church on Sundays and think about any of us who can't even physically make the trip any more. Take a good look at yourselves. These are people that are just a turn away from you. Have a bit of compassion.
I haven't said anything about Joonie not working. We all know she's not going to be able to work that's not my point.
No; I don't know your situation all I know is what you are telling us here. Isn't it possible that you and your husband could find another place to rent that would be a little more in your budget? How exactly are you helping Joonie by "supporting her" when you know the choices she's making are ones that will soon leave her in a worse fix than she's in now? How exactly is that helping her? The things I say may hurt her feelings.....but if you are honest you will admit it's true. A few of us a little older.....also a tad wiser due to our own life experience.
Just as I don't know you Joonie.....you don't know me. I graduated high school three months pregnant and trust me when I say life has been an up hill battle ever since. When my husband and I divorced and I was left without any finacial support from him I had to call my father to help me pay my house payment one month. He said "Sure sweetheart; I can help you this time.....but what are you going to do next month? Or the month after that?" Unlike you I have been fortunate enough to have family members in my life that have given me valuable advise and helped to steer me in the right direction. Advise that have helped me make smarter choices than I did when I was very young. I can't help but wonder where those folks are in your life. Surely your In-Laws have to know that you and your husband will have a very difficult time taking over the payments on their home when you can barely afford the trailer in their back yard.
Now my advise may sound mean spirited or what was it one of you said? "Malicious"? But in my opinion my comments if taken in the manner in which they are intended will help Joonie and her husband far more in the long run that not pointing out to this young family when they might be going in the wrong direction. Support comes in all different ways. I personally hope to give Joonie and her husband a little something to think about and consider. Something that in the long run might just help them get going in the right direction. How long is your help going to help her?
I'm not saying things just to be mean and to be honest had just anyone posted this topic I would probable never have commented; but I feel like someone needs to help this young Lady understand some basic things in life. Sadly it seems that advise here is only welcomed if it's Sweet and Nice.
Often the most valuable comments here will often hurt your feelings. I'm real sorry that upsets you Deanna. Real sorry.
Just wanted to say that if you are going to criticize someone's spelling you should learn to spell yourself - the word is grammar not grammer.Could my friends please stop trashing each other? It is hurtful to all of us.
Once upon a time it was normal for kids to have a stay at home Mom.
Today it is normal for kids to have a working Mom. Yet most families live pay check to pay check anyway.
The true measure of a family and society is how they treat their least able members. We are not doing so hot here.
We can't afford to help Joonie as a society because we have overspent ourselves on this oil war. The big guys in the corporations are sending our jobs over seas. This is why Joonie's hubby who works full time can't make enough money to afford to live in his parents back yard in a tin can. Not every American can be a corporate leader making multiple millions each year, the ordinary guy should be able to live decently off his labor.
Joonie can you rent out the mobile home? Even 0 a month would help. I don't know what rents are in your area but 250 would be dirt cheap in Phoenix - and most likely located in the middle of a gang war.
That's a great idea Marian. That could be a big help.
Joonie~I really am sorry. I don't mean to be mean despite the way it may sound.
I am wondering if you all think poorly of me as I live a nice life style and I live on partially my SSDI. I have no guilt. I have worked since I was 10 - seriously - I did farm labor. I hate not working. My budget is not what it used to be but we are doing all we can to keep our lifestyle. Joonie has made me angry many times but in this case, it is hard for me to blame her. Even though we are on social security, we still want to have as comfortable of a life as possible. I have had to sell several very sentimental things to continue my lifestyle but I live in a nice home with nice things and a great family. I do not work. I CANNOT WORK. I miss working. Should I now feel guilty for living a decent lifestyle ?????????????No Roxy. It is ok. ROXYAs I was reading through the horrible comments, it saddened me deeply. Berating the poor girl for splurging on a tub of cheesecake (an inexpensive indulgence if you ask me), and even suggesting she go to work in pain, because that’s what you do. How can you possibly tell what her physical condition is by reading posts on a bulletin board?
I’m thankful every day that I am able to work. Yes, some days I have to take a pain pill or two to make it through the day, but those are few and far between. I know some day that may change. I will work as long as I’m able. If it comes to a point in my life when I can’t work, I will file for disability. That’s what it is there for. Shame on you for trying to make her feel bad for having to get assistance.
We aren’t here to make judgments on how people live their lives or spend their money, are we? If we are, I’m definitely on the wrong board. This thread is sorely lacking in compassion.
I dont live in the USA but i suppose it works the same here in the UK. Each persons life is different and to say to Joonie that she lives in a trailer because thats what she chose is so wrong. Maybe something happened in her young life or her parents life to make finances tight. To be able to work with a disability is a gift , its a gift of life because to not work brings discrimination , loneliness , depression and worthlessness. To claim disability or social benefits can cause loss of dignity because how we are made to feel. I have worked hard since i left school. I have travelled extensively and lived in a country where we had a huge house and swimming pool, maids and garden help . I have also lived close to the breadline with nothing. I am married to a lovely man who works really hard, he gets up in the morning, makes his and the kids lunches, runs the kids to school, comes home helps me bath and dress and breakfast, he then goes to work and does 8 hours while i have my mum to look after me, he gets in from work and 5 nights out of 7 he cooks dinner and cleans up.He never moans about it ever. I am one of the lucky ones and because of his hard work we have a nice home, car etc and i also claim disability benefits because i need them for ME ! It takes the place of me working, it feels like i am contributing to the household.Does this make me a burden on the system ? My disbility has bought me a scooter, it pays for my car, it buys me special shoes and gadgets to help me along, it pays for my medical prescriptions. I would hand it all back to go to work but like so many people on here I cant work. Oh by the way I have cable t.v and the internet.
For the record, I have nothing against disabled people or people truly in need. My beef lies with people calling the tax payers greedy. I still don't understand how a tax payer is greedy when they are paying and working.edited because hubby said to
Oh and by the way joey2 I was referring to you and the others who complained about me abusing the system as being the greedy taxpayers. I do not view every taxpayer as being greedy. I use to be a taxpayer and everyone I know is a taxpayer. So... only those of you that complained on this thread are what I consider being the greedy taxpayers.
Lovie, I wasn't speaking directly to you when I used the word "malicious". I was commenting on the ones who could have shown some compassion in their criticism.
Oh and it is not my choices that have put me in the situation I am in now, it is my JRA that has put me in the place I am. It has always been an uphill battle for me thru out my whole life. I was brought up by a 54 year old single mother, who worked as much as she could, even though she should have been probably almost ready to retire. I have had even my own siblings to down me and think I was lazy from the time I was 3 years old. I have been a burden on society since I was born. I fought my way thru school, I had to repeat kidnergarden, because of many many missed days from JRA and not being able to get out of bed and move around like normal kids. I missed alot of school from kidnergarden to 6th grade, but once teenage remission hit, I took advantage of what a normal life was like to the fullest extent. I even went and got a job, so I could have the things in life I had to do without. You would think being the only child at the time, I would have gotten everything my little heart desired, Not!
I am hoping that one day I can go to work. I am like everyone else on this board hoping for that mircle cure. I do not like to be a continued burden on society nor my family. I want to be more than I have ever been in my whole entire life. I want to be successful and make something of myself, but how can I do that when I cannot even play with my kids like a normal mother can.
I was sitting on the front porch at my in-laws the other day waiting for daughter to get off the bus and son was out playing in the yard. I was talking the MIL and I was talking about how he loves to play outside, but he only sees that when she is home or hubby is home, because I am afraid to be outside with him by myself as I cannot chase him down if he runs towards the road or even the railroad tracks. She said at least you are home with him. I replied yeah and thought but I am waste of a mother and always have been, even with my daughter. I am a waste of a wife. I cannot do the things a mother and wife do on a daily basis.
It hurts me to tell my daughter no she cannot do something because I cannot protect her. Or that my daughter loves her granny much more than the one who gave birth to her, because her granny can do much more with her than her young mother can. It is not that I do not want to do things with my daughter, it is that I cannot do them. I was never able to get in the floor and play with her when she was a baby, I was never able to chase after the leaves with her, I was never able to go to the pumpkin patch with her, her granny done all of that because her young mother, could not do it, because of a horrid disease she has had all of her life.
I have been limited my whole life, why should I limit the rest of my family because of something that has nothing to do with them. I feel like a true burden and have since I was a kid. I remember all the arguments my mother and siblings would get into because of my disease, because they did not understand what it was about, like so many people in this world.
I hope in my next life, if there is such a thing, I can be a normal person and get to be able to play with my kids, and be the wife, mother, and person I was ment to be.
And Deanna, for the love of God, please don't go. I look forward to your posts every day for so many reasons. I always learn something, that's for sure. This board cannot do without your knowledge and compassion. Please.Deanna, I so totally agree with you and I understand where you are coming from Joonie, noone wants to be poor, and believe me if I could still work I would be there everyday, I miss it and I made really good money, now I receive about 1/4 of that monthly not from SSI or SSDI but from survivor's benefits, right after we adopted our little girl, he passed away, and then I was diagnosed with RA, I was able to fight it for a couple of years until I woke up and couldn't move my hands or feet. People look at me on a good day and say "You don't look disabled" well I would gladly give up any benefits that I may ever get from disability, I've been turned down twice, to be able to work. No one has the right to judge anyone until they've walked in their shoes.OKAY YOU GUYS IT IS HAPPENING AGAIN. WE ARE NOT HERE TO JUDGE PEOPLE. IF YOU HAVE NOTHING NICE TO SAY DO NOT SAY IT AT ALL. JOONIE HAS A GREAT SENSE OF HUMOUR FOR SOMEBODY WHO HAS BEEN THROUGH SO MUCH AND SHE DOES SAY WHATEVER IS ON HER MIND BUT SHE DOES NOT ATTACK PEOPLE OR JUDGE ONLY WHEN SHE IS ATTACKED FIRST I HAVE BEEN COMING TO ALL THESE THREADS FOR A FEW YRS I AM A QUIETER PERSON. I AM ON DISABILITY AND WOULD ALSO WORK IF I COULD I HAVE A 7 YR OLD. ALL OF US ON DISABILITY WOULD RATHER BE AT WORK NOT ONLY MAKING MORE MONEY BUT HAVING HUMAN CONTACT. ANYWAYS MY ADVICE TO THE PEOPLE WHO ARE JUDGING KEEP YOUR COMMENTS TO YOURSELFS SO PEOPLE LIKE ME CAN NOT FEEL UPSET READING THIS CRAP THANKYOU TERESAWe'll I certainly stand corrected. If you and your husband can take over payments on your in-laws home and own it in 9 years at 1 a month you hold onto that sucker and don't let go.
You can't rent an apartment in the worst parts of town for that much. I do apoligize if I insulted your In-Laws by thinking they weren't looking out for your best interest.
Looks like to me the In-Laws are giving you and your husband the opprotunity to be OUT-RIGHT home owners on less than 10 years!
That's certainly a heck of a lot more than a good many of us that have high payments on a 30 year loan have.
Hold on tight.....do whatever possible to keep up the payments on that home and you and your husband will certainly be in a better place 10 years from now.
I feel a lot better after hearing this news. I know you think I was being mean.....but I was honestly concerned for your long term well being.
You both should sleep better at night knowing that if you do whatever possible to make this work; you guys will ALWAYS have a roof over your head.....whether you ever work a day in your life or not. That should be comforting to know for anyone like us that faces an uncertain future.
I have tried so hard to stay out of the controversial topics as of late, because I don't want to keep something going that should be dropped, however, this time I can't stay silent.
I am APPALLED at the insensitivity and arrogance displayed here toward Joonie. People who claim to be sensitive and positive individuals have brought this poor woman to defending her very existence! HOW DARE YOU!
Joonie was born into her circumstances as we all were. And she is doing pretty darn well in my book. She has a husband who clearly loves her very much, a supportive family, and two happy, healthy children. In spite of her extreme struggles she has managed to maintain a sense of humor, and bring it to us to make us smile. As you hear her tell her stories about potty training her son, you can tell the love and the pride she has for her children.
Do I agree with everything she says and does? Nope, don't need to. She is a different person than I, with a different upbringing and background and her thoughts and actions are based upon that. Just as mine and yours are! But she does not deserve to be attacked by bitter, thoughtless individuals who play on this board, interjecting negativity for their own entertainment.
Joonie, if you PM me your address I will buy you a whole GD case of cheese cake filling! You deserve it. It's not like she was out drinking, smoking and gambling with her SSI folks! She was stuck at home, in pain, and unable to do things most of you take for granted. Sometimes a person just needs something to make them smile for a moment - shame on you for wanting to deny her even that.
In my opinion some of what's transpired here has been very productive.
Can people disagree but still be friends?
Never mind.....don't bother answering that.
Hey Lovie,
I know you did not mean to be harsh. I know you better than that. I just did not want to give out all of the information on an open forum. I know it will sooner or later bite me in the butt for posting it all.
My in-laws are always there for us. Yes, they could have sold their house to someone else and not even asked us if we wanted to take over payments and left us high and dry trying to find somewhere to move her trailor to, but they are not like that. FIL is a preacher & MIL is a nurse. They have given and done so much for us and our kids that I know they would never do anything to hinder us. They are the ones who think of us first, before themselves. If we do not have money for something and they just happen to have some left over they will give it to us. They have done a lot for us in the 8 years I have been a part of their family.
I just do not want to have to burden them with having to continue to help us, which is what will happen if my check is cut off, because then I will have to depend on them once again to pay for my meds and doctor visits that we cannot pay for. I truely only use my checks for neccessities, I am not a waster, I have never had money to just waste.
Joonie.
I am just really glad to hear you have good family support. I know it would be twice hard without it. (At least.) I am fortunate to have family nearby also. That has been a huge blessing. I hope your tomorrow is a better one. I sure hope that our system updates some day, and I hope you all are well.
Aren't we ALL here for the same reason? I would think that above all, WE would be more understanding and compassionate. This thread makes me sick to my stomach.
Right now, I can work. I have only been dx since Oct '06. I have already seen a huge change in my activities due to this crappy disease. Some day, I will need assistance of some type, that is a guarentee. I know that, because this disease is unforgiving and it is attacking me like crazy.
It is none of anyone's business how anyone, not just Joonie spends her money. I sure don't want anyone telling me how to spend mine. So what if she splurges on something once in a while. Who cares?
I would much rather my tax dollars go to someone who has this crappy disease than someone who CHOOSES to sit home and not work, but are perfectly able. As we all know, RA attacks people differently. Just because some of us can work, doesn't mean that all of us can work.
Let's all try to be a little more understanding. She is one of us, remember?
Phatgirl2
Lovie, here is where I think you are one classy lady. You listened and you apologized when you understood the situation more. We all, including myself definitely, say the wrong thing at times. And, I know you only meant to help. But how admirable that you would come back and say such kind words and prove that you only wanted to support Joonie.
Yes, lady, that is classy.
IIt's already been made clear by some that you don't want to hear about how hard it is. You only want to hear from people that are responding well to their medications, that can keep working. Anyone that fails to do that had just better leave.
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With all due respect, I believe that an individual that is newly diagnosed will benefit more from those of us who do respond well to medication and don't use this open forum to discuss, in minute detail, the unfortunate events that many of you encounter. I suspect that the people I am referring to may have had this disease for many years and did not have access to the medical knowledge that has changed the world of RA. It has been proven that many of the drugs on todays market can stop the progression of this disease, which for a newbie means we may never experience what you experience. I believe a person diagnosed with this disease today needs positive feedback so that that may lead a full and prosperous life.
Lately, there's been more than enough discussion on how some people on here lack compassion and empathy and don't understand what many of you have to deal with. I think quite the contrary, I think many of you resent the fact that a newbie has a chance of conquering this nasty disease with the available options on the market today.
Once again, I am certain someone out there will take offense. Just remember I am offended everytime I come here and see the same people playing their song over and over again. It's a two-way highway - remember that.
Ari
people come on here for a number of reasons.I am glad you are doing well, I did too for a number of years, unfortunetly for me the disease decided to go mad and attack more joints and leave me unable to do anything about it. Its not about people playing their song over and over again, its about being able to vent to others who understand.Its how we learn what this awful disease is about and how it can affect each person differently. Maybe there needs to be a newbie board for those who have it under control and function in every day life quite normally. For people who are racked with pain and immobility, who have become depressed due to their condition( because depression does play a big part) they need the support of others a great deal.Being upbeat about it all is great and there are days when i personally dont let it get to me but there are days when i cant move, cant get dressed and cant even deal with my own personal needs, these are the days that i need someone who understands.
My only hope for you and all other people who are newly diagnosed with this is that you are always able to cope and your meds work wonders because it will hit you hard if you ever get as bad as some others who post here.
Ari33 I think I finally get it. You are scared. You can't allow yourself to admit the possibility that your disease could advance to the point that some of the most unfortunate individuals on this board have. When they post, it is a constant reminder to you that this is happening to people and they have no control or ability to stop it. That is very, very scary.
Everyone needs hope - even the sickest among us. That's why they post on this forum, to be encouraged by their friends, to say I'm scared and feel alone. They need to reach out and be heard. In return they can share their knowledge and experience, as they have already walked the path we are just starting on.
I applaud a postive, upbeat attitude. And I receive a lot of encouragement from those who are doing well. I enjoy hearing other's successes. I think if you are honest with yourself there is a great deal of that on this forum. But the statistics posted here from the Summit don't lie - the majority of individuals diagnosed with RA will be unable to work within 10 years.
You are incorrect assuming that some of our most severely disabled members were diagnosed years ago when they "did not have access to the medical knowledge that has changed the world of RA." The sad fact is they got very sick, very fast - and within the last couple of years. Often they have been hit with a double whammy and got two or even three diseases for the price of one. That happens with auto-immune diseases - once your immune system gets fouled up, it can cause multiple diseases.
No one here would object to your posting positive, upbeat comments that encourage. That happens here all the time, and we love it. But please do it without slapping someone in the face at the same time. That negates the positive feeling you are trying to promote. That is why your initial introduction got everyone's hackles up.
The people of this on-line community welcome new members and enjoy getting to know our newbies. If you truly explore the postings you will see they are welcomed with great encouragement, and a wealth of knowledge. But we are here for the less fortunate among us too, who are so beaten down by their disease, by the devasting impact it has had on their relationships, their financial status, and their ability to even care for themselves. We can't deny their suffering to make ourselves feel better. They are there asking for emotional support - nothing more.
I know you need to feel different from them right now. But listening to other's struggles and pain with empathy, even if they need to ask for support every single day, does not diminish your own ability to battle the dragon. Rather it enriches your soul and gives you a better understanding of our world and variety of people in it.
All I ask Ari33 is that you read this with an openness of heart and some self-examination. I try to do that every day, asking myself how could I handle that better. It's amazing what you can learn about yourself and your fears and prejudices when you do that.
Excellent Hillhoney, just excellent.
Phatgirl
That was concise Hillhoney, thank you. Excactly what I wanted to say but didn't know how.Hillhoney, thank you for posting that.
ari, I am so happy when I hear someone is responding well to their treatment. I didn't ignore this disease when it hit me. I've have fought hard from the beginning and so has my doctors. One of my friends here, Roxy, was a park ranger only 2 years ago. Now, she can't walk and she can barely feed herself. It's devastating to hear her story. But those are just the outside facts of her life. Who Roxy is the bravest soul you would ever care to meet. And those of us who have had the priviledge of following her life have been able to cry with her, laugh with her, watch her overcome absolutely impossible barriers. Not only has she had to deal with a very aggressive onset of her illness, but she has had family struggles as well. So, we have gotten to know her, her family, her doggies, the fish in her aquarium. We got to see her new house. She has taken us on a wonderful journey.
Now, you would say to her and to me that because we no longer are responding to our meds that we should get lost so that you can feel more comfortable with your disease.
This is not the attitude of some other great people. Lovie for instance, works and responds well to her medications. But that doesn't mean she doesn't have challenges or bad days. We all have bad days. But she's here pretty much every day cheering the rest of us on. And, she is far from the only one. She's not about to let someone go without a word of encouragement.
And I have learned so much about courage and the will to live from those on here with JRA. They have lived with it their entire lives never ever knowing health to begin with. And, they are filled with life and humor. They bring joy to my days.
Hillhoney is right you are afraid. But please think of it this way. Pretend for a minute that you are in a cancer ward in some really fine hospital. The person next to you was just diagnosed with cancer last week. You've been diagnosed for a month. The one on the other side of you has had it for two years. And, down the way is someone who has had it for six years.
The one who just got their diagnosis is going to die from their illness and so is the one who had it for six years. The rest of you are going to live. But some of you are going to have to have radical surgery in order to survive. Others will do well with the medications and will leave this sad experience behind.
But does that mean you should throw the very sick out of the room because it makes you more comfortable? Do you have any idea how it makes me and others feel when here, in a support group, you tell us we are too sick even to participate and that you think we should just leave?
Every day, I am fighting this disease. From the very first, with the very best of doctors and the very best of medications. You are fooling yourself to think you can walk this path unscathed. I hope, no pray, that you don't suffer with this illness as I have. The reason, the biggest reason that the veterans keep coming on here is to be here for the newbies.
The news that you have this disease, even the struggle to get the diagnosis is so painful and so overwhelming that we know you need the support. When you have those tests, and you get vague results, we know you need an explanation as to what is happening to you. When you suddenly go from being able to walk just fine one day to not being able to get out of bed the next, we know that you need to be reassured that you are not crazy, that this is just part of the disease and we can help you find your way through the maze of doctors and treatments that will help you.
What you said today and before really hurt. You basically told me to shut up, you don't want to hear about my problems. Just like the rest of the world who thinks that RA is the same as OA, that it is only old age, just pick yourself up, change your attitude, eat better, exercise more...it is the same attitude we fight every day from our closest friends, our families and our co-workers. You have this disease and you are saying to everyone else in the room if you are not as well as me get the hell out of here.
You can't run from this disease and shoving us out will not affect your prognosis. No one wants to dash your hope. The medicines and progress they are making are remarkable. Right now, I'm thinking of our dear friend Mark who was also afraid when he came here. But he's here practically every day either asking questions or posting research he's found on fighting this disease. He's just as scared as anyone else, but damn if he's not going to fight. And, he's find his capacity for compassion.
We cannot make the ugliness of RA go away for you. I'm sorry. The doctors can't do that either. You have to use your fear and apply it to fighting with everything you've got. We are here to provide you with the weapons, the encouragement, the strength and the knowledge to help you in your battle.
But please do not deny me the right to look for support. I am personally having a very tough time of if right now. I can't take the meds any more. I can't walk half the time. I can't hardly cook or clean. I can't work. It is so devastating. This place has been my place of sanity, my place of hope. It's not fair that you would shove me or my other dear friends out of the room because it makes you more comfortable.
People in our society don't like to face the fact that bad things can happen. You are going to lose friends and maybe even family members because they can't face the fact that someone as good as you can get so sick. They are going to be so afraid of it that they are go