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"Hi....Please forgive me if I have already emailed any of you..I couldn't recall if I had...blame it on fibro-fog -- plus forgive me for sending this as a mass email -- it is not to irritate or aggravate anyone...but to email all of you one by one isn't that easy and it takes me hours!
I am writing all of you because we all share something in common...I also have FMS/MPS..literally one day I was fine and enjoying life and the very next day I was in such pain that I couldn't sit back against any chair-couch-or seat in a car...10-3-1998 was the last time I slept more than 4 hours...and for some reason I can stay up for 3-5 days at a time..my neuro told me last year about this time -- after he tortured me with every test that could be done -- that I had a severe form of FMS --- meaning that most of my tests came back with no problems, except for my blood work, it showed high levels of inflammation but we didn't find anything that could cause it. It is one of the things I hold on to so I don't think I am crazy...
My 24 year old sister has FMS as well as my 12-year old son, Tim...
So here is what we are trying to do...We are contacting as many people with FMS as we can find..even friends and family. I am gathering a list of people who we think can help all of us if we stand up and be counted. It's bad enough to be 36 and have to look 40 years down the road to see that each day and each tomorrow will be filled with pain...but my son and sister have so many years left, plus if this is hereditary like the researchers are beginning to believe, I don't want my nieces or grandchildren to have to fight this battle down the road.
The list contains email addy's like: Oprah, Montel, Rosie, Maury, Leeza, Geraldo, 20/20, 48 Hours, 60 Minutes, The View, The Today Show, Good Morning America, all the health editors for ABC, NBC, and CBS, Donny & Marie, World News, Nightly News, and so on....there are more! The plan is that I will send everyone a copy of the list and if you are rushed for time we are going to offer different types of 'form letters'....we have people who want to email these places daily or every other day -- we are asking anyone to mail continuously. You do what you can, if you can, this is not something that you have to do, it is your choice, we have one day that we are asking everyone to email on - May 12 as it is Fibromyalgia Awareness Day...to the people on the list and we can mail out the way I am sending this to you! There are some addresses to where we have to go into sites in order to email...I am willing and prepared to send you the links to those sites so you don't have to go looking and searching for them. All I ask is please give this some thought, if we don't stand up for ourselves then no one else will either!
We need funding for more research, to get it we need the public; doctors and Social Security to know that our pain is real, that FMS is real!!
There are doctors out there still telling patients that the pain is all in their heads, that the real problem is that they are depressed, doctors are afraid to give us pain meds because they don't want to be investigated by the DEA for writing too many scripts for controlled substances and they are afraid we will become addicted -- too many tests show that people who really need pain meds do not get addicted, the ones who get addicted are the ones that already have a drug habit.
We have a right to be heard, a right to stand up and be heard! Maybe some of these doctors need to go through some refresher courses so they know more of what they are doing...and I know that I have worked in a real job since I was 14 and I have paid my money into taxes, I shouldn't have to fight so hard to get something that is ours any way...you too!
So please consider this please...help us in this effort so we can get funding and somewhere down the line they will find a cure or decent treatment. I hope you will help us... *H&P* Julia/Jules/~Purple Angel~ I answer to all of them. *S* Here's wishing you a as painless as possible day!"
The list of how to contact the media is now on this site.
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