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How do you all stay alive without enough finances or help/care from others?
- Thread starter enginewitty
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you're a kind soul Jennifer
things are coming together.. peace by piece, mostly thanks to all you guys on here m(_ _)m
not out of the woods yet but not giving up either
thanks to everyone for participating and I sincerely hope this discussion is spreading some light on other people's situations as well
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"Enginewitty, the 2 day CPET is the only diagnostic test that SSDI will accept for immediate benefits for a pwCFS. I was approved for SSDI within two weeks of submitting my test results late 2010. I was not yet completely bedridden
( 2011) but needed 12-14 hours sleep/day and could run a few errands each week with minimal ability to cook, clean and shower. Only a handful of facilities offer this test and it's expensive."
holy crap that's awesome!! that sounds exactly like me scenario except I find myself going out almost never, can't cook or clean, etc. but... that gives me a lot more hope and some ideas. thanks
"The former Pacific Fatigue Lab( now Workwell Foundation operating two California labs) charged $2000 with only $99 covered by my insurance plan ( out of system). Severely ill ME/CFS patients probably face a very bad crash or long recovery time post testing. I had a two to three week recovery period ( from post test 10-15% of my pre illness function level back to my pre test 30% level). Definitely worth it for me."
will keep this in mind.
"It's criminal that this testing is so difficult to get yet it's the only test considered valid by SSDI for an ME/CFS diagnosis. "
agreed
"Here are some links to sources I found helpful incl PR threads.
http://forums.phoenixrising.me/index.php?search/25290825/&q=2 day CPET&o=date"
awesome will check it out.
thanks so much!
( 2011) but needed 12-14 hours sleep/day and could run a few errands each week with minimal ability to cook, clean and shower. Only a handful of facilities offer this test and it's expensive."
holy crap that's awesome!!
that sounds exactly like me scenario except I find myself going out almost never, can't cook or clean, etc. but... that gives me a lot more hope and some ideas. thanks "The former Pacific Fatigue Lab( now Workwell Foundation operating two California labs) charged $2000 with only $99 covered by my insurance plan ( out of system). Severely ill ME/CFS patients probably face a very bad crash or long recovery time post testing. I had a two to three week recovery period ( from post test 10-15% of my pre illness function level back to my pre test 30% level). Definitely worth it for me."
will keep this in mind.
"It's criminal that this testing is so difficult to get yet it's the only test considered valid by SSDI for an ME/CFS diagnosis. "
agreed
"Here are some links to sources I found helpful incl PR threads.
http://forums.phoenixrising.me/index.php?search/25290825/&q=2 day CPET&o=date"
awesome
will check it out.thanks so much!
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Jesus Ginger
I feel sorry for you after reading this. (hope that doesn't come across wrong, like, I wish I had some answers for you to get some relief. you sound way worse off than me and I'm not in good shape by any means) you seem so positive though despite your situation that's awesome I have read that the core cause of all "mystery illnesses" from Alzheimer's down to CFS/ME is due to EBV infections. apparently everyone (at least in The US) is infected to some degree. The tricky part is that for the most part it lays dormant until some significant trauma is experienced, be it emotional, physical, etc. there are apparently over 60 different types of EBV spanning 5 seventies with about 10 types in each category and each category being more devastating than the last. On top of this (as if we needed more complication smrk), it will depend on the a variety of personal details as to how severe someone will be or can be affected by EBV. Oh, and for the most part, unless you're in the middle of an outbreak, you won't be able to test for it because EBV doesn't live in your bloodstream, it lives in your organs AND they with over 60 different strands, it's anybody's guess as to which one you've got. There is no universal EBV test to my knowledge.
With all that being said, I don't claim to know it all. I am wondering if you are aware of any type of test that can verify EBV infections? You're the first person I've seen to mention this as a cause of decreased vitality so I would love to hear if you have any other knowledge up this avenue
Peace
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This is a quote that helps me to really take responsibility and keep focused on what I want. I hope it can help you too
"If it is important to you, you will find a way. If not, you will find an excuse."
Gingergrrl
Senior Member
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Jesus Ginger
Thanks for saying that and I am trying to stay positive but it is hard! Best wishes to you as well and I hope you will find the resources that you need to get back to the US (and to sustain you once you get here.)
am wondering if you are aware of any type of test that can verify EBV infections? You're the first person I've seen to mention this as a cause of decreased vitality so I would love to hear if you have any other knowledge up this avenue
I've been tested by Quest & Lab Corp in the past and my doctor views them as valid. I assume SSDI did, too, but I really don't know. I think I was approved by how poorly I performed in the physical exam even though I did my best plus four doctors saying I was too ill to work.
I honestly do not know if EBV is at the core of my problems and at present, I believe it has shifted to an autoimmune disorder based on most current labs. Most recent labs I am not IgM+ for EBV (after 3-4 years of being positive) but I now have five pathogenic auto-antibodies, positive ANA titer, abnormal EMG (muscle) test, and we think autoimmune caused phrenic nerve disorder. So was it all started by the EBV, I don't think I will ever know, but I suspect it was.
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I agree with this. It would buy me a whole lot of happiness. I have lived a lot of years with this illness with the stress of not knowing how to make ends meet. The stress is immense and it goes on. To have the financial stress taken away would make me very happy.
hope this thread can shine a little light on your situation
All I want is enough to live on in a decent neighborhood with enough to pay the bills and food. I am thrifty as hell, and know how to buy things cheap, but if my SSDI is denied, the last thing I will be is happy.
I was not able to read all of the other replies. But my simple answer is: any freakin' way you can.
I find there's no one solution--there are a million micro-solutions that don't come anywhere close to actually making life survivable, but added together somehow, some way, cause life to continue so far. That's really all I know.
A few specific things that have worked for me:
I found that if I could get out at all and have positive experiences with a group of people who cared about each other, then that eventually formed community and I became one of "them" that they naturally wanted to take care of and set up with any resources they could spare. This has saved my life several times, even with almost ocmplete strangers who are a friend-of-a-friend and offering to help.
Letting friends and family know that I'm on the lookout for odd jobs, and suggestions of what I can do. I had nearly a decade where this wasn't even a possibility, but now I'm "well enough" that I can do a few things. Through word of mouth I get occasional house-sitting gigs that simply require my presence and perhaps putting food out for the dog. I also found I can do some house-cleaning, though I can only do 1.5 hours max and that's on a really good day. I have a friend who pays me $25/week to clean her small 1 bedroom place, and allows me full flexibility to come pretty much any time of the week, even multiple times if i can't do it all at once. It's not something I could do professionally, but because we've found an arrangement that mutually suits, it works. And some weeks I still can't make it at all and she doesn't fire me for it or get frustrated.
Getting on SSI has made a world of difference in making it possible for me to become somewhat independent, before I was able to do this kind of occasional work. I'm still too disabled to survive without it. However, be aware that it is extremely stressful to maintain. Just last month I got a letter abruptly stating all benefits had ended--both income and medical. It was a total shock and without warning. Phone calls did no good, I had to go to the office in person and wait several hours before finally being seen. It was resolved, but not without a massive amount of self-advocacy. "I was on vacation" was the excuse of the social security worker. Oh, and they had thrown away the important mail I had sent them as per their request WITHOUT EVEN OPENING IT. They threaten your income right and left whenever they review your case medically or financially. I've had to get my congressman involved twice now.
The stress alone of dealing with SSI significantly contributes to my disability. And I'm realizing, for me personally, the scales are beginning to tip towards "well if they're going to waste this much of my precious time, energy, and emotional spoons then maybe I can find odd jobs I can do that 'cost' me the same amount or less than, and then I could have income without the restrictions on saving and receiving gifts and such."
I hear ya, I've been there, and I'm still trying to crawl out. Take care. *hugs*
I find there's no one solution--there are a million micro-solutions that don't come anywhere close to actually making life survivable, but added together somehow, some way, cause life to continue so far. That's really all I know.
A few specific things that have worked for me:
I found that if I could get out at all and have positive experiences with a group of people who cared about each other, then that eventually formed community and I became one of "them" that they naturally wanted to take care of and set up with any resources they could spare. This has saved my life several times, even with almost ocmplete strangers who are a friend-of-a-friend and offering to help.
Letting friends and family know that I'm on the lookout for odd jobs, and suggestions of what I can do. I had nearly a decade where this wasn't even a possibility, but now I'm "well enough" that I can do a few things. Through word of mouth I get occasional house-sitting gigs that simply require my presence and perhaps putting food out for the dog. I also found I can do some house-cleaning, though I can only do 1.5 hours max and that's on a really good day. I have a friend who pays me $25/week to clean her small 1 bedroom place, and allows me full flexibility to come pretty much any time of the week, even multiple times if i can't do it all at once. It's not something I could do professionally, but because we've found an arrangement that mutually suits, it works. And some weeks I still can't make it at all and she doesn't fire me for it or get frustrated.
Getting on SSI has made a world of difference in making it possible for me to become somewhat independent, before I was able to do this kind of occasional work. I'm still too disabled to survive without it. However, be aware that it is extremely stressful to maintain. Just last month I got a letter abruptly stating all benefits had ended--both income and medical. It was a total shock and without warning. Phone calls did no good, I had to go to the office in person and wait several hours before finally being seen. It was resolved, but not without a massive amount of self-advocacy. "I was on vacation" was the excuse of the social security worker. Oh, and they had thrown away the important mail I had sent them as per their request WITHOUT EVEN OPENING IT. They threaten your income right and left whenever they review your case medically or financially. I've had to get my congressman involved twice now.
The stress alone of dealing with SSI significantly contributes to my disability. And I'm realizing, for me personally, the scales are beginning to tip towards "well if they're going to waste this much of my precious time, energy, and emotional spoons then maybe I can find odd jobs I can do that 'cost' me the same amount or less than, and then I could have income without the restrictions on saving and receiving gifts and such."
I hear ya, I've been there, and I'm still trying to crawl out. Take care. *hugs*
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@Dainty
thank you for this post. I hear you on the SSI stress.
If it comes up again remind yourself this: If they make an administrative mistake with your case you will ALWAYS be able to get your benefits back in the end, and you will always get back any backpay.
It may be a pain, but you will be able to.
I have never met anyone who lost their disability check if they continued to pursue or appeal it. I've met a few people that gave up, but I've never met or heard of anyone who persisted and didn't get it straightened out in the end.
Knowing that helps me feel less stressed.
p.s. even with medical reviews over 99% are approved in the end. it is mostly the people that drop out who lose their benefits.
thank you for this post. I hear you on the SSI stress.
If it comes up again remind yourself this: If they make an administrative mistake with your case you will ALWAYS be able to get your benefits back in the end, and you will always get back any backpay.
It may be a pain, but you will be able to.
I have never met anyone who lost their disability check if they continued to pursue or appeal it. I've met a few people that gave up, but I've never met or heard of anyone who persisted and didn't get it straightened out in the end.
Knowing that helps me feel less stressed.
p.s. even with medical reviews over 99% are approved in the end. it is mostly the people that drop out who lose their benefits.
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been looking for this my whole life. I've never "fit in" anywhere. in one sense I like that about myself. in another, it's fucking difficult being in social situations, and sometimes you just want to hang out and relax with somebody
if I could find this now, this disease might actually turn out to be kinda good ^^
hadn't thought about that. nice idea ^^ will think about how I could do this
Jesus!! That's just scary!! :O
Has anyone been proactive about calling their social worker once a month or so to "check in" about potential stops, etc.?
This sounds, like waaaaaaaaaaaaaaaaay too stressful to deal with.
I hope you were able to budget enough so that you had some savings when this happened
Yeah, after hearing what everyone has been saying on this thread and doing just a bit of research myself, I've come to the same conclusion; it'll be way better if I can find some way to make just between $500-$1000 a month and live a minimalist lifestyle. just the mental aspect of being "unable to do anything productive" and being "forced" to "be dependent" on anyone or anything just strips me of almost any hope. so yeah, if I can find some way to get enough mental energy and focus it into something that creates an enjoyable income for me, I think that's the better option personally speaking.
Thanks
Hugs back at ya
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WOW! Really!?
well that puts a different spin on things
do you happen to have a reference for where you got those stats from?
I was told by a law firm that only about 65% of cases are approved and that the majority of them go to the 2nd and final appeal before benefits are granted
Hi andy,
My stats were about reviews, not applications. Sorry
Once you are on disability it is easy to stay on (as long as you are willing to be persistent), but it is more challenging to get on in the first place.
For applications:
roughly 33% of initial applications are approved
roughly 66% of appeal hearings lead to approvals
there is also a small reconsideration appeal step in some states, but it is usually a formality.
My stats were about reviews, not applications. Sorry
Once you are on disability it is easy to stay on (as long as you are willing to be persistent), but it is more challenging to get on in the first place.
For applications:
roughly 33% of initial applications are approved
roughly 66% of appeal hearings lead to approvals
there is also a small reconsideration appeal step in some states, but it is usually a formality.
It is wonderful that some people have experienced success with getting on disability using the CPET.
However....To the best of my knowledge, there is nothing in the social security policies to suggest that this test will lead to an immediate approval for cfs. There is no guarantee that this test will lead to an approval, but I certainly see how it can help a case under the right circumstances.
If the test wasn't expensive and potentially dangerous... I would just say everyone should run out and get one! But since it is so expensive and potentially dangerous, I feel cautious.
However....To the best of my knowledge, there is nothing in the social security policies to suggest that this test will lead to an immediate approval for cfs. There is no guarantee that this test will lead to an approval, but I certainly see how it can help a case under the right circumstances.
If the test wasn't expensive and potentially dangerous... I would just say everyone should run out and get one! But since it is so expensive and potentially dangerous, I feel cautious.
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been looking for this my whole life. I've never "fit in" anywhere. in one sense I like that about myself. in another, it's fucking difficult being in social situations, and sometimes you just want to hang out and relax with somebody
Honestly, for me my survival has depended on finding ways to fit in, so it's been something I prioritized a lot. In the professional world this is called "networking", and it's a learned skill that you don't develop overnight. E.g. searching meetup groups, local events, discussion panels, anything where I might share common ground and interests with another person. Frankly, my life depended on it. The key to social interactions is to help the other person feel comfortable and have a positive experience interacting with you. That's it. Most people like to talk about themselves, and being empathetic and just asking questions gets you pretty far.
The ones most likely to help you in a functional, non-drama manner are the ones who will ask questions about your life and interests, too. If you can talk about some common interest, or share things about your life that they enjoy hearing (that creates happy feelings!) then you've succeeded in that interaction. If you attend the same weekly event most weeks for, say, 2 months and have similarly positive interactions each time, a connection is built and that person typically cares, at least somewhat, for your well being.
Hanging out and relaxing is awesome for friends. Networking is essential if you want/need to increase your "tribe' of people who care about you. Networking looks easy but is actually hard work and, as I said, a skill. It might not be the way you choose to go, but for me it's been absolutely essential to my survival.
Most of the time calling my local office I get an automated system that directs me to call the national line, because the local office is too busy. When I call the national line, after being on hold for an hour or so, I'm told I need to call my local office. The folks on the national line can be helpful fr general information, but are horrible about actual account information. They catalog it incorrectly (never have they done so correctly, which has resulted in all the errors) and have also given me completely opposite information.
No, you are not allowed to have savings when receiving SSI. All of your accounts must remain under $2000 total or your income stops.
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I agree with Dainty. Social security is the black hole of information. If I have a caseworker, I have never been told who it is.
However, I have never had a problem with my ssi check.
Yes, 800 national number is useless.
Dainty, I didn't know that some local offices don't pick up. There is no way to override the automated system and reach a real person?
However, I have never had a problem with my ssi check.
Yes, 800 national number is useless.
Dainty, I didn't know that some local offices don't pick up. There is no way to override the automated system and reach a real person?