I'm not in good shape

[perovyscus]

I generally try to keep my posts objective.

I simply do not have the fiscal resources to manage this illness. The worst part is my family's suspension of disbelief, that I am a racehorse that just needs to keep on going. That I'm a type-A student able to complete a hard sciences degree cum laude. I don't need to reiterate the public stereotype I've received from every external party. I am 24, I have limited credit. I have nothing to go into bankruptcy with. I have no house to re-mortgage.

From a purely economic perspective, getting me 50% better may cost roughly $10,000. My overall contribution to society will eclipse that in two or three years of regular work just in income tax.

I need an advocate for unemployment.
I need an advocate for SSD.
I need a doctor knows more about physiology than I do.
I need a CFS specialist.

Of course, this is pure postulation, but I imagine I will die soon without these things. I can be out of bed for about four hours per day, and that is more than some. With my brain burning like charcoal on a spit, I still somehow manage to feel luckier than most.

 

[CBS]

I realize that it is only one small part of the issues you face but in the case of social security disability, attorney's generally take on cases for a percentage of back benefits. It can take a while to work your way through the Social Security system but it is a possible route health care benefits and some income.

I interviewed a couple before deciding upon an attorney. There are some out there that really are trying to help.

 

[Andrew]

I'm sorry you are doing so poorly. There are social security attorneys who work by phone. Binder and Binder is an example. But you also need a doctor who will go to bat for you and fill out the forms in a way that reflects your disability. Do you have such a doctor. I know they are not easy to find, but I have a blog here about doctor hunting.

 

[dannybex]

I would show your parents this video made last year by Laurel, who has been sick for 12(?) years and is bedridden. Perhaps then they might at least start to understand how serious the disease can become?

http://www.youtube.com/watch?v=LvweCk44WHs

It's very heartbreaking and powerful at the same time.

Regarding attorneys: While of course there must be some honest, sincere lawyers out there who really want to help you get your benefits, keep in mind that it's in their best interest to drag a case out as long as possible, because they'll then end up getting a larger fee. If at all possible, perhaps you could contact the local CFS support group in your area, and get a personal referral from someone in the group.

One thing a member of our local group taught me was that it's VERY important to stress your disabilities, both physical and mental, but stress what you CANNOT do, not what you can do. If you have four 'good' hours a day, they need to know how much of that would be used up getting ready for school/work, and getting back home.

But show them the video...and others on youtube. Perhaps then your family will start to understand.

Best of luck,

Dan

 

[zoe.a.m.]

I generally try to keep my posts objective.

I simply do not have the fiscal resources to manage this illness. The worst part is my family's suspension of disbelief, that I am a racehorse that just needs to keep on going. That I'm a type-A student able to complete a hard sciences degree cum laude. I don't need to reiterate the public stereotype I've received from every external party. I am 24, I have limited credit. I have nothing to go into bankruptcy with. I have no house to re-mortgage.

From a purely economic perspective, getting me 50% better may cost roughly $10,000. My overall contribution to society will eclipse that in two or three years of regular work just in income tax.

I need an advocate for unemployment.
I need an advocate for SSD.
I need a doctor knows more about physiology than I do.
I need a CFS specialist.

Of course, this is pure postulation, but I imagine I will die soon without these things. I can be out of bed for about four hours per day, and that is more than some. With my brain burning like charcoal on a spit, I still somehow manage to feel luckier than most.

perovyscus, I am older than you now, but have a similar background in terms of having been very serious about doing as well as possible in school (which for me meant that below a 4.0 made me very very anxious) and a family of people who (continue to) have about a 5% understanding of what's wrong or that it's serious and unrelenting. I too was never able to secure anything financially to allow me at least one thing working in my favor as I got sick. I've been really struggling to find an advocate or even a counselor who will advocate. So far, I've found no one, but I live in a remote area and I don't think it's representative of all areas. I will give you any info that I come across since we are struggling with a lot of the same challenges (I've found a doctor who acknowledges and treats CFS, but he is a ways away from where I live and is not covered by insurance--at least not mine), but so far all I can tell you is that I haven't really found these things. I'm considering trying to find a mental health person--preferably a doctor--who can at least back up that I'm not mentally ill (as my family seems to continuously hope for to some degree) and that this level of stress upon a chronically-ill person is not going to get them closer to their goal. My goal is closer to learning to live with letting go of what my expectations are and trying to find worth and self in who I am.

My local hospital has one (1) medical social worker who was willing to counsel me on a sliding-fee scale and who could offer info about applying for services (except I've already done that part and await my hearing), so, if you have a local hospital, they should have a similar person(s) and I would suggest calling them and seeing if you can get an appointment. Also, if you know anyone with MS or Lupus, they sometimes have gone through similar things but have more recognition and sometimes have ideas (this is how I found my way to the hospital looking for a social worker). Keep looking, look everywhere you can and look at it from every possible angle and hopefully you will get one opening and can go from there.