Hello Everyone,

I posted this thread on the CFS site, and thought that it may be helpful to a lot of people over here too. So I have copied it here.
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I had answered NatashaW's question about receiving SSD for CFS, and began thinking about whether or not most people had the information that she needed. I decided to open a new Thread about how to go about getting the help that we need if we can't work and don't have someone else we can depend on.

First, yes, do apply for Social Security Disability. Don't count on it though, even if you are able to succeed in that area, it is most likely going to take years to accomplish. But all it takes to apply is a phone call, or simply stop by the SS web site online <www.socialsecurity.gov>. They will walk you through the steps from there. An attorney is a good idea if you aren't familiar with the process... it will improve your chances of collecting SSD or SSDI, but it will cost you some of your "winnings."

Second, make sure to call and talk to the local chapter of Social Security Disability Vocational Rehabilitation Services. You should be able to find them in your blue (government) pages, and a call goes a long way there too.

Everyone will need all of your medical information, and the more specific your Dr. is the better able people are to help you from their position.

Thirdly, contact your local county social services and ask to apply for state or federal Medicaid. I had to go back and forth with these guys for 4 years before I finally found someone at the county level who would take the time to look and find the program that I qualified for, but now I have medical insurance and prescription coverage for the 12 different prescriptions I am on each month! Unfortunately, they won't cover things like a chiropractor or herbal remedies, but they do cover the $2,000+ worth of monthly medical costs that I incur currently. And before I was able to be on regular prescriptions, I was unable to even do the basic things to take care of myself and my home. Now I am looking to train to have work again!, at least part time.

There is a Federal Medicaid program that adults who are disabled and unable to work (but who currently are not on SSD or Medicare) will qualify for. But you have to be persistent, and call your state program to get information for the county workers if you have to. For 4 years I was told that "there is NO medicaid for ANYONE who is not a child, or not pregnant." It made me ask if I should go out and get pregnant! The thing is though, no matter how much they believed what they were saying (and most of them still do) I knew there was coverage. I had spoken with a state representative who told me about the program I qualified for! I don't know... I hate to say it, but they are 'government workers'... they don't have a record of going out of their way for people. You have to go out of your way to help them help you!

Fourth, contact the pharmaceutical companies that you are being prescribed medications for. Most of the bigger companies have compassionate care programs where they provide medications for free or at a substantially reduced cost. Some Dr.'s offices have this information, but if yours doesn't don't let that stop you. Get online (go to <www.needymeds.com>, or search google for "prescription medical assistance"), or watch for their advertisements on TV. The medication you are prescribed is important... find a way to stay on it!

Lastly, if you belong to a church or community organization, talk to their leaders. Many of them have programs that could help out on a temporary basis.

Whatever it takes, keep looking and keep talking to people, and keep asking questions of people in a position to help. There is a lot of assistance out there for people that need it, so don't be afraid to ask for the help that you need! People can't fulfill the needs that we won't let show. And suffering in silence may seem noble, but it doesn't get you anywhere but on the road to more suffering! Asking for what you need is the first step to becoming independent once again!

I hope this is helpful to anyone who needs the help.
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Tanuki

Our family has been on this road for quite a while. This is a very helpful list. First ,it is helpful for the person just starting. Second, it is very encouraging in that it tells you that you are not the only one that the road blocks have be put up for. It tells me to keep trying. There is help out there; but you have to be the one to look; it isn't going to come to you. The keep trying part is so hard when you are barely have enough energy to the daily chores. It shouldn't be this way, but the harsh reality is that you have to help yourself.
Thank you for the list.

Has anybody found assistance getting the new Ambien time release?

Dear Grace106;

This is the post you are looking for.