Need some advise. : Hello all, first... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Need some advise.

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Hello all, first let me tell you that I live in the US so getting assistants is different than the UK. I can't work due to my Fibro, anxiety, and nerve damage in both my hands. I have applied for disability but there is no telling when my case will come up. I think my mortgage company will work with me and freeze my account for 6 months. The problem is that I have no income at all. I'm selling everything I can just to get some cash to pay the lights, water, and the basics.

I have been seeing a state appointed social worker who half listens to me. One he almost fell asleep, each other time he is always checking his phone. He had offered me no help excet maybe one. He said I might be able to be admitted to a state run program mainly for alcoholics and drug addicts. I have neither of those problems but if I'm accepted, it will buy me some time. Hopefully enough time until my disability case comes up.

When I think of such places I have thoughts of really sick people that I cannot relate to. I feel the last thing I need is to be around people like that. I don't need the stress. Also my anxiety goes through the roof knowing I will not be where I feel safe. I get anxiety when I travel more than 10 miles from home. The upside is I will have no bills and it may buy me some time. However there is also the possibility that my disability case will take longer than 6 months. I have little faith that these doctors can help me cause I've seen so many already but I'm pretty much flat broke. All I have left to sell is tools in my garage. So, what do you all think?

I will tell you that I'm scared to death to go into this program, but it may be my only choice. I assume they will pay for my meds. If not, I'm not going. The daily pain is too great and I sleep a lot and I'm not on a normal schedule. What are your thoughts?

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Tracy45 profile image
Tracy45

I am so sorry it sounds like a nightmare. Everything I have read and people I have talked to said that the states were far more advanced in this desease than we are in the UK. I think I would push this social worker in to action, try having a total breakdown in front on him they don't seem to cope with that and will do ?more to help. Anything is worth a try.

Not sure about a drug and alcohol group! Question for SW does he think you a drug dependant and has no idea about your problems.

Hope that is a little bit of use

Big hugs xx

in reply to Tracy45

No, he does not think I have a drug problem. This was the only thing he could come up with to keep me off the streets if I lose my home as I wait for my disability claim. Maybe I do need to push him more. I do plan on confronting him about his lack of attention to me. The time we have should be for me alone. I even had a phone session so I could save on gas. During the session he put me on hold.

Tracy45 profile image
Tracy45 in reply to

He sounds useless! I hope you manage to sort things out. I feel for you, we are talking about getting a different home as I might not be able to work any more and it makes me feel sick. I was told by my consultant that I need to have a happy thoughts and have little treats and ever since then things have got worse.

I only asked about drugs as one of my own colleges accused me of being a drug addict.

cctexan profile image
cctexan

I m sorry you hurt so deeply... I understand as I have to cope w this since 99.. Maybe ask for new case worker. I think it's hard to go in there for help and feel frustrated you are not heard. I was able to get food stamps for awhile..

Maybe take in boarders? You got to do what you need to.

I applied for ssi in 2000? Got it in late 2002. They check if you are able to support yourself, if you ha ve assests, If you have income. Mine was dropped by employers to 600 before eventual firing in 2000. I never really worked a real job til I got some he lp.

I got ssi fotr another reason after my third decline, I had hitred an attorney as it is so hard to get.

Ive never heard about a state living program for ppl waiting for disability, but I will say , if you aren't an addict and you think so little of those types,, why would you take space away from them in that program? I'm surprised a state worker is so sneaky to suggest that. Shows you how corrupt our systems are.

Addiction is life and death. Every bed given to those who won't work the program ( use it as a flop house) and get sober or to people who aren't addicts, takes away a chance for recovery /for someone to live.

I took on work like clean houses, , soldbevery bit of furtniture, paintings, i lost mynhouse and moved to a trailer w va hole in thevfloor whete animals would clumb in... I mop offices etc, to make ends meet until the disability process finished. I know it sucks. I thought I would die waiting. But even though I was waiting, I nstill had money to drink and run around, god provided even when I refused to believe.šŸ…

See, I am recovered 12 years! so I've seen people work the recovery system for years. And I've seen the types that go in.. Some desparate, others working a con to get a bed...I've also seen about 110 people I knew personally die from this alcoholism. Its worse than the fibro and lupus... Cus families are destroyed, children orphaned....

. You may want to see about calling united way in your area, they may have info on group homes?? United way is a good clearing house for info on anything you can imagine. Depending on your age, there are some limited resources.

Honestly, it seems there is not much out there until you can prove your need ( the important papers). I spent 5' months of n my car, other time on friends couches. It got really rough.

The govt doesn't want to fork out income for the rest of our lives for millions of people. Plus you are only allowed another1000.00 in working income., so I will never plan on being rich. Back in the day, we got disability for the insurance since we didn't have that obamacare ...now I'm too old to work at my old job. Too sick.

I'm content trying to get strong enough to work my own dealio.

Good luck

cctexan profile image
cctexan in reply to cctexan

Man, my ting sucks at 4 am. Sorry guys

in reply to cctexan

Thanks for the reply. I agree that I might be taking a bed away from someone who has an alcohol or drug problem. I do have an attorney for my disability but it takes time. I am on my second appeal where I think I will speak to a judge next. I truly think I will get approved when my case comes up. It's just a waiting game now. I physically can't work even part time. I am getting food stamps but need cash to pay electric and water and my meds. I will take it one day at a time and see what happends.

cctexan profile image
cctexan in reply to

Hey, you know, in your area, there may be some church organization that can help w electric and stuff, check that united way. In Houston its a 211 number. You can message me if you want me to scope out stuff for you.

The judge one goes fast, they devided within 20 mins. Then the wait for the $ still happened.

Please listen to the attny. Mine had me take the bus in, I already had had years of drs appts reviewed by then, plus saw their drs. There were judge, and 3 experts to interview me. I walked tyo the appt in the summer, so I looked pretty ragged. Don't go in wearing your suit and tons of jewelry.. Of course aall mine was gone and I was ragged poor by destroying then. But they didn't need to know I had hung on to my car.

In Texas ppl of my age at the time, 39, were considered too young to get this without a fight. I had had a head injury, that was affecting self care, medical, memory, PTSD, psch lus hep c plus anxiety and fibro and still wasn't considered sick at first... So don't feel bad if they make you prove more

I really urge looking into mindfulness meditation.

It helps relax and calm me to a point I feel no pain, nor anxiety. There are self guided free meditation online. You can master it to do fairly quickly, w practice. It gives you control over some part of your life again, I stop d feeling so victimized b circumstances and my body. The brain can do remarkable things

It's good we can reach others... Not everyone understands. And you know how the US is about the pills for pain, so we have to find things outside the box.

bluebell99 profile image
bluebell99 in reply to cctexan

Hi

I did know that it was tough to get any sickness benefits in the US but had no idea you had to be practically bankrupt to survive whilst waiting for decisions to be made.

How is it that a supposedly civilised country treats its sick and disabled people so badly?

We moan about our situations here and it is true that some people are struggling to make ends meet but not on the scale you are experiencing, I am shocked.

Is there anything you could do for friends or relatives that may be paid back in meals or fuel, maybe baby sitting or pet sitting, a little light gardening or car wash?

I know your health would limit any strenuous work, especially on bad days but people who know you would probably be willing to help by paying you in kind, (bartering).

I do agree with others that going into an abuse recovery system would not do you any good and there is the ethical question of taking a place when someone who desperately needs to control their addiction cannot get treatment.

Is there a local church group, food bank or volunteer group you can join? Sometimes helping out at a shelter could entitle you to a free meal.

It may be all little things but it could be a way of tiding you over.

M y heartfelt thoughts are with you.

x

BaffledKaffy profile image
BaffledKaffy in reply to bluebell99

Many churches in the Dallas area offer help to needy for specific electric or other bills for people in circumstances such as yours. I work w/a group in my own church in a local suburban area ... we have a dollar limit, and can only help each person once each year, but we do give money, with only a few questions asked, such as reason your present need (out of work, illness), your account info, etc.. There are a couple social service groups in the area, as well, who also give $ to those in need. Some churches make home visits, ours doesn't ~ we send a check to the utility requiring payment once we confirm amount, etc. I am surprised that you have not been advised of such resources.

in reply to BaffledKaffy

I have called 2-1-1 and they said there is only 2 places in my zip code. When I called they said I don't qualify. They only help people who have had a issue like a job loss or death in the family within the past 65 days. I've been sick for 2 years.

BaffledKaffy profile image
BaffledKaffy in reply to

I'm sorry that your local area does not have the same services. Our rules are less stringent. I personally have worked with this group in my church for several years (the "work" is all on the phone) and have had some clients return for three or so years in a row now ... once their year limit has passed, they come back again for more $. Even tho' we can only give $200 to $300 ea., depending on our donations, we are as generous as possible ...

If I were you, I would personally contact some Methodist or Catholic Churches in your area on a weekday (phones aren't covered for that on weekend). Those denominations might offer help, but you'd later have to go in w/your bill, etc.

in reply to BaffledKaffy

That amount would be perfect. I working with my mortgage company who said they may be able to freeze my account for 6 months. So all I need is money for the basic bills.

I will call around.

Thanks

BaffledKaffy profile image
BaffledKaffy in reply to

Great! Good luck ... and let us know how things go for you. Private mess. me if I can help any further ...

cctexan profile image
cctexan in reply to

Martk. 211' is for the big organizations or govt stuff. Start CA

Long the bigger churches. They will know where to send you.

cctexan profile image
cctexan

Oh inthink the barter idea is good. My mom lent me money I paid back when I got my back pay from ssi.

What is frustrating, is we pay into social security, each pay check. For our retirement, or in case of disability, then go through a two year process of trying to attain it.

There are immediate psays for HIv/AIDS patients. But not ppl w rain cancer etc. They've got a short cut called compassion something to review them in a six month period I believe.

The ssi check is based on what a person earned over their career, so young people w no real work history, a stay at home mom, they get medicaid not medicare and it caps out at around 650.00 so its not enough to live on. It does give u medical insurance and food stamps. Medicare is based on 75% of what one use d to earn... So might be livable if u had a decent job

It is deplorable, but that is why obamacare passed,so people weren't discriminated in insurance. We had pre existing illness clauses, so people w hep c like me, were dropped from any health care. And heaven forbid if u got sick again.

Now ppl can see a Dr w their insurance which supposedly is subsidized by the govt. But America does not look kindly on bums so to speak. If you don't work, you are consider ed less than others. I ve been told so by drs and ppl

TheAuthor profile image
TheAuthor

I just wanted to say that I am so genuinely and sincerely sorry to read of your plight, and I hope with all my heart that you can find some resolution and relief to these issues.

All my hopes and dreams for you

Ken

Hello Mark,

I wish you good luck in your hunt for help. Here are some suggestions as well. If you have already tried them then please forgive me.

Firstly, get another Social Worker if you can - you deserve better!

Did you serve in the military or have family members that did so - can they help you at all?

Do they have food banks near to where you are? That way maybe you could get food from them and then use any food money for paying the bills?

Is there any way that you could do odd jobs for people like a bit of light gardening in exchange for stuff that you need? You say that you have tools, what was your trade or job?

Is couponing an option for you to get reduced stuff to use or trade?

Best wishes,

Dave

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