
Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
If I could get myself cured I'd write books and be a CFIDS advocate. I'd never to back to my former "real world" again.
While being a CFIDS/ME advocate in various ways, one of them would be to teach the government about the ramifications of their political cruelity on the victims of our illnesses. To expose the government. To make public how their financial interests are killing us: The longer I have CFIDS/ME, the more impossible it is for me to fully recover.
I wonder, in addition to how others of us would spend the million, if others feel they are suffering b/c of the government.
But I could definitely go for a log cabin ... and yes ... there is no sound better than that of running water. Ok. My kids voices, but they're not always soothing. LOL.
I would TOTALLY only by from local farmers. I know there are places where one can buy produce from a local farmer ... a friend in WA state gets a back of veggies and eggs every WEEK from a local farmer. But I don't have that around me.
I just listened to an interesting speaker on some news show about "the missing class." They're the ones who are too "rich" to qualify for gov't. aid such as food stamps etc, but are too POOR to be able to live a stable life. If I get LTD from my employer I'll fall through that crack. If I don't I'll qualify for food stamps. Either way it's not pretty. Pardon me for not being particularly PC, but if I had AIDS and couldn't work??? People would be freakin' lining the streets to help me. And we all know it. Ditto w/cancer or some other life sucking illness. Us? The gov't. is only to happy to turn their heads so they don't have to watch us fall through the cracks. The gov't only want to help with it can look like the hero and saves the days. Can anyone save our days??????
And I absolutely agree a million dollars would never buy us a home near the ocean.
Hugs,
Rosanne
It would be a good start. In the reverse, I also won't allow the lack of it to keep me from starting. But if I had it?
First, a personal assistant to help me do all that I can do about this. A smart college kid would do fine, even part time. How much more could I do, if I only had someone to make calls and help organize?
How much better would I feel, if I didn't forget pills and stuff like that? How much easier would I rest if birthdays and bills weren't ever forgotten? So the assistant first, to make the rest possible.
Finish this book, and let the proceeds (if any) fund more of this work. And if not, at least it will have been said.
Next a PR firm. To get the message out - not the government's message, and not the message of those beholden to the government. There are some good folks working there, but mostly they still don't get it. An annual CFIDS Week and luncheon does NOT get it done, so sorry. I want somebody doing public service announcements and visiting our congress critters with that message, because we are not supposed to be the ugly stepchild of this whole system.
And I don't want to build a million green homes. I want to build one or a few, to show it can be done. And I don't want 'em all that green, either. I want 'em human, I want 'em mold-free, and I want 'em to make truly independent living possible for patients and their families.
Then I want my PR people talking to Architectural Digest and others about what can be done and why it's both a good business AND a good social proposition. I want them showing it to those same congress people.
I want to hire a grant writer, to hel[ get others interested in these projects and help make the funding happen.
Next up, these medical societies that are propogating the lies, inaction, and misinformation in connection to this whole range of illnesses. I want to break that chain. When physicians get lied to, people suffer. Oh...wait. That one was cheap, and it's already being done.
And I want to address this Social Security Disability thing. It is NOT ok for people to work their whole lives and pay in only to get abused and ripped off when they are in need. Ohhh - that one's also being done. Volunteer activists.
I'd like to get a class action going with the others ripped off by these large disability carriers. That would cost way more than a million, but I'd kick in. That's already being done, too, but doesn't include PWC's as a specific class.
And a fund to help those who can't afford their meds or physician's visits or basic living expenses. That would be more than a million, too. But I'd like to kick in.
I'd like to help my doctor get her Biotoxin hospital built. I'm sure it would run more than a million, but again - I'd like to kick in.
I'd like to get a patient transport system going for MCS and other biotoxin patients who can't travel to see physicians who can help them. It would cost a couple hundred thousand to start it up, but it's do-able.
And I'd like to get an independent physician's roundtable going. Invite them speak, and put them together over lunch and dinner for a weekend - see what they can do together when they get to take a break and really talk to one another instead of trying to deal with all of us while they work their tails off independently. That's easily within budget. Maybe they can agree on a testing protocol that kicks the insurers' butts once and for all, ya think? I they would agree and sign off on that...so much would change for so many of us!
Maybe I could hire someone to do something graphic and punchy on the old Yacht here. Like they do with commercial vehicles. Ho ho! Then I could literally carry a message! Maybe 20 grand?
Personally, I'd like to let go of working on most of these other tasks myself, and spend maybe $20 or $30 grand getting some of my inventions prototyped. It's just small stuff designed to make life easier, but prototyping costs money. Throw in some more of those little frozen crab cakes, and I'm good to go. Sunshine is free.
Mainly - I just want the assistant, the grant writer, and the PR people. With them, the rest can be done. These are the people you can invest in who make more money available to do the big stuff. I think people would help us, but they have to know why and how. And we have to be the ones to tell them, because no one else really knows.
(Come to think, I'm not nearly as short of ideas or money as I am short of hours in the day and the energy to use them well. But don't let that stop you! Cold cash is good, too. ; )
Can I have a hot fudge sunday?
1. A maid (obviously, I have a two year old son-visualize the tasmanian devil from bugs bunny)
2. Regular massages
3. Someone to run errands for me
Thats about it, I guess anything that makes it possible to eliminate the daily stress of the day to day responsibilties that drain my energy so all my good times could be spent enjoying my kids.
We don't want much. We just want a portion of what we've lost.