• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

How do you all stay alive without enough finances or help/care from others?

Messages
70
@ggingues provided key PR (Phoenix Rising) links for you to read.

I thought you also might like to go to the source, the researchers who discovered the 2-day CPET. Contact www.workwellfoundation.org. They conduct the CPET testing & are based in California. You could also have your lawyer contact them with any questions.

If you are not close to California, they may be able to recommend someone in your area.

There is also Dr. Betsy Keller in Ithaca, New York. She has replicated Staci Stevens' (Workwell Foundation) findings and also conducts the CPET testing for patients.

Good luck!

awesome! thanks :)
 
Messages
70
Hi, Andy (@enginewitty). I was able to PM you again, another PM a few days ago, some more information. I'm not sure if you received or noticed it. I'm thinking of you and hoping someone has come through for you and something is coming together for you.

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 :)
 
Messages
70
"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!! :D 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!
 
Messages
70
Hit send before I got other links up ; (

http://www.workwellfoundation.org/
http://solvecfs.org/ss-ruling-rescinded-and-replaced-for-mecfs/
http://www.shoutoutaboutme.com/testing/the-2-day-cpet-a-gold-standard-test-for-mecfs/
http://www.ncbi.nlm.nih.gov/pubmed/24755065

I believe ME/CFS M.D.s, Enlander in Manhattan(Mt Sinai), Daniel Peterson in Incline, Nevada, Charles Lapp in Charlotteville, North Carolina and Betsy Keller at Ithaca College, Ithaca, NY do 2 day CPET in the U.S. also.
Dr Ruud Vermeulen is in the Netherlands: http://www.cvsmemc.nl/our-doctors/dr-ruud-vermeulen/

How to Crowdfund : http://www.cnbc.com/2015/09/15/how-to-crowdfund-successfully-tips-from-experts.html


awesome! thanks :)
 
Messages
70
@KitCat cognitive testing by a recognized psychiatrist can be very helpful in proving disability, but is expensive, maybe $1500 or so. Also I did a tilt table test which was very unpleasant but showed dysautonomia. I think one of the most important things is to have s history of medical visits, medications and tests, doctors notes etc to document your impairments. It's less important to have a specific diagnosis. But going to a CFS specialist means they will document everything properly, since they understand the disease and can write letters on your behalf.

This is very helpful. Thank you :)
 
Messages
70
My case was based on my physical limitations which are profound vs. a specific diagnosis which is what my atty advised us to do which worked. Each doctor gave their own opinion from ME/CFS and viral reactivation of EBV virus, to MCAS to profound pulmonary restriction/lung weakness to Hashimoto's, etc, etc.

The common ground was that all doctors said that I was profoundly ill and could not work in any job in any capacity for any amount of time. I had a 16 year rock solid full-time career before getting ill and it was clear to the SSDI doctor doing my assessment that I couldn't stand up even for a few minutes.

The tests that were abnormal were several failed spirometry and PFT tests, a treadmill test, viral titers for EBV showing IgM+ re-activation and several others, a V/Q scan, a TTT, other blood work for MCAS and episodes of anaphylaxis and more that I am not remembering off the top of my head.

After approval, I had an even better TTT that was 100% positive for POTS plus evidence of neuromuscular problems/antibodies, but I guess I will have that info for the future when my case is up for review.

Hope this helps!


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 :D

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
 
Messages
70
I find it daunting and awful to not only be sick, but be poor. I am not poor yet, but I know I will be. That sucks, too. To know that right now, you are okay providing that you don't spend money on anything "fun" but at some point you will be poor. Not only cutting back on fun, but cutting back on some of the very treatments that have really helped me. Like chinese herbs, or a massage. I miss those things, or getting my hair done. I do my own hair now, minus the cut.

The cost of living is out of control.

It's like a time bomb, worrying about money. It ticks and ticks and it makes my illness worse. I can't even live in the present because of it. I will run out of money someday and then what?

I have been looking for an apartment to rent that is less expensive around my way. Well, good luck. My rent is just as much as my SSDI and that is over $1,000. If I want to live somewhere less expensive, I will have to live in the hood with gunshots. No joke. A shitty area where my car may be stolen.

The places that are less expensive in the states have no good doctors or hospitals. I live near a major city on the East Coast. I really don't want to pick up and move to Kansas. You trade one problem for another. So, you have cheaper rent, but you also have no doctors and have to worry about tornadoes. Good times.

I had a friend say to me a couple of years ago, "You know, if you won millions of dollars, you would still be sick." Yes, true, but I could deal with it a whole lot better. I wouldn't have to worry if I had a roof over my head or if I was going to be on the street. I could live nicely, not worry about whether I should buy that shampoo or not. I mean seriously. I thought that was such a dumb statement. And if you are really sick, you can hire a shit ton of help. Who the heck wouldn't like that? We could hire chefs, people to help us during intimate dire circumstances.

Whoever said money doesn't buy happiness is bullshit. Try living without it and then talk to me. Having problems like health issues, or a broken heart sucks, but having health issues, a broken heart and anxiety all of the time because you have no money is the absolute PITS and I am not even in that position yet, but I am already mentally there because I am constantly worried about the future.

I am just going to say it...I LOVE MONEY. I have learned that. Why? When I have had it, it has given me relief. Stability, better healthcare, appointments with expensive doctors, dinners out at fancy restaurants. No worries if I ruin my car bumper...just pay to get it fixed! Come on...money is pretty awesome.

Since walking away from my mom....I lived so frugally and let me tell you, it's awful. I have been miserable. No money for a concert, for some of my favorite things...cutting back on things I took for granted my whole life. No massages, no luxuries of any kind and then worrying all of the time because you realize just how much money it takes to really make it. To really be able to take care of yourself, your rent, your car. It's insane how expensive it is to live and get around. I can't take the bus. I am too sick.

I can never live in the present. I am not in the present ever. What is it like...living in the now?

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
Messages
16,171
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 :D

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.
 
Last edited:

Rvanson

Senior Member
Messages
312
Location
USA
hope this thread can shine a little light on your situation :)


It doesn't buy happiness ... there are plenty of miserable rich people as an example of that. What it does buy is comfort and security. Happiness comes from somewhere else.

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.
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
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*
 
Last edited:

KitCat

be yourself. everyone else is already taken.
Messages
222
Location
US
@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.
 
Messages
70
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.

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 ^^


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.

hadn't thought about that. nice idea ^^ will think about how I could do this :)

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.

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

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."

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.

I hear ya, I've been there, and I'm still trying to crawl out. Take care. *hugs*

Thanks :) Hugs back at ya ;)
 
Messages
70
@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.

WOW! Really!?
well that puts a different spin on things :D

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
 

KitCat

be yourself. everyone else is already taken.
Messages
222
Location
US
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.
 

KitCat

be yourself. everyone else is already taken.
Messages
222
Location
US
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.
 
Last edited:

Dainty

Senior Member
Messages
1,751
Location
Seattle
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.

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.

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.

I hope you were able to budget enough so that you had some savings when this happened

No, you are not allowed to have savings when receiving SSI. All of your accounts must remain under $2000 total or your income stops.
 
Last edited:

KitCat

be yourself. everyone else is already taken.
Messages
222
Location
US
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?