Re: Stacey

[Guest guest]

Babs wrote:

Hi Stacey, Good luck with your block next week. I do hope it works for you. I do believe too that you probably would have benefited more from blocks if they would have been done before this.

Hugs,

babs

BABS YOU ARE SO RIGHT ......I SHOULD HAVE LISTENED TO Y'ALL AND GOT THEM BEFORE NOW.I AM SUCH AN IDIOT! MY DR. FELT REALLY BAD FOR ME WHEN HE SAW MY HAND. HE SAT ME DOWN AND TOLD ME THAT UNFORTUNATELY THERE IS NOTHING SURGICALLY THAT HE COULD DO TO FIX IT AND MY ONLY HOPE FOR MOVEMENT IS THE BLOCK, AND LETS HOPE IT WORKS SO THAT YOU CAN DO AGGRESSIVE PT. HE SAID THAT HE UNDERSTANDS HOW PAINFUL AND FRUSTRATING IT CAN BE, BUT HE AND MANY OTHER DOCTORS FEEL FRUSTRATED TOO WHEN THEY CAN ONLY HELP AN RSD PATIENT ALLEVIATE THE PAIN BUT NOT CURE THEM. THAT WAS THE ORTHO DR. I WILL SEE THE PAIN DR. FROM NOW ON,WHO IS IN THE SAME OFFICE. HE IS A GOOD DOCTOR WHO HAS TREATED MANY RSD PATIENTS.

WELL" NO USE CRYING OVER SPILLED MILK "RIGHT?

THANKS

STACEY

NYC____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

there are times when i feel alone. what do i do. i play solitaire or

just listen to soft music. or for mysef i pray. the nights are the

longest for me. since i have been sick with the flu i have ever in my

life watched so much tv. some of the commercials are so stupid. hope

you are feeling a little better and can get some sleep. cathy

[Guest guest]

thank you for responding to my queion. never ad fever like this before.

hope today will be better. i sweated all night long. i have never

sleeped so much in all my life. thanks for caring, cathy

[Guest guest]

Tonia,

Thank you for lighting the fire under my ass, and giving me the information on Bill 1863. Do you know if that is currently in the House, or Senate? I am one of the new kids on the block as far as the group is concerned, but having the problems with the arm and the meds. I am like everybody else here, and I have gone through the same old crap from doctors about just wanting the drugs and not having a problem at all.

I like some of your suggestions in this message and I think I will follow through on some of your advice. I have found a good set of doctors here, but it took me a little over 3 years to accomplish that. I will get active and creative to see if there is a way that I can raise awareness on a local level. Thanks and I hope you're having a quiet night.

Respectfully,

Mark in Spokane

Alias: Greybeard the Wonder Dog

PS: I am a loony fool

-----Original Message-----From: Tonia Sent: Wednesday, March 03, 2004 1:17 AMTo: RSD-CRPSofAmerica Subject: Re: Stacey

Stacey,

I know....and thanks. Its just that I've heard the words "I don't care anymore", and "I give up" so many times lately, that the words dance thru my head when I DO actually get some sleep!

Most of you on this list that posts, are fairly new to the RSD and the pain...the Mental and Emotional Ups and Downs of it....the Financial losses and problems....and the Treatments that are out there.

Then, there are a few of us, that has already been thru the HELL of W/C...and has either won their cases, or, gotten so screwed that sitting down is way too painful!

I got screwed over so bad this past summer by W/C, that even NOW, sitting down hurts! I went 2 1/2 years without meds, a doctor, treatments...anything except for being told that I was a malingering liar, that I was More Psychotic than any In-House Patient that this one Hospital has ever had (although 5 minutes later they let me walk out of the doors on my own), that I was just a Druggie (I'm actually not allowed to walk into 4 different ER's in my area anymore)....the works.

BUT, I haven't given up! I'm in a group where we go and FIGHT the System....we write letters to the Media, Congress, Reps, the Senate and the House, the President.....WHOEVER that we think needs to have their heads pulled out of their butts, and actually SEE that there ARE Pain Patients out there that will fight for our rights!

We write these letters constantly....we keep hounding our Reps, We will literally send hundreds and thousands of letters to those in the Media that decides to call us all Drug Addicts...and even to the DEA, telling them that no matter how many doctors they try to hang...We Will STILL fight to get our Pain Meds, and there is nothing that is going to stop us!

Right now, I'm typing out a letter to ALL of those Reps, Senators and Congressmen from Iowa, including the President and Vice President....

The Pain Care Bill 1863 is STILL trying to get enough backing to go thru....and, the only way that is going to happen, is if we ALL wrote to our State Reps and Congressmen/women....

All you have to do, is type up your story, and the reason WHY you want this Bill to go thru...in your WordPad. Then, after you write it, save it! Send it to those people every single week!!! Most of them recieves Emails....and, if we keep hounding them, and harrassing them with the Emails constantly, ONE OF THESE TIMES, THEY WILL HAVE TO LISTEN!!!

Now, look at the members here who have been dealing with the RSD, PLUS other medical problems that they have, that they've either had before RSD, or they got from genetics....or, that was Caused BY the RSD...for more than 5 years.

Babs is one of them. What, 23 years now? She hasn't given up hope.....she is STILL hoping that one day there will be a cure, or, something that will help our pain A LOT better.

is another....10 years now. PLUS Bone Cancer...and is unable to take ANY Pain Meds. Instead of giving up on life...she works security in her building, she helps take food to those in the building that can't get out.....or, she'll just go and try to cheer up someone. She even offered to help Sami for me with the Science homework...since she used to be a teacher.

She finds things to keep herself busy and helping others, so that she has a REASON to get up every morning...whether she wants to or not.

Deb G....what, 5 years now? And Jo and Felice. Instead of giving up, they started this wonderful group so that others can get help, or give help to those who needs it. Deb would do just about anything and everything she could, to help someone. lol, including putting up with me!! I've messed up royally here and there in the past 3 years....I've opened my mouth at times when I shouldn't of (like right now probably)....and, instead of chewing my ass out like it has needed it....she'll send me an email privately telling me what I did wrong, and, how or what I should do to correct the mistake. Jo has also helped quite a few people out, Financial Advice. With RSD, or ANY kind of Chronic Pain...unless you are as rich as Trump or Bill Gates....we ALL have found ourselves in Financial troubles.

And Felice, she is a GREAT listener....which is why she is the Chat Momma.

Then, there is also Deb 4++ ( I hope I got that right..) I know that she's been thru the Mill and back so many times....physically, mentally and emotionally, due to things in her life. SHE hasn't given up either.

Sharon Roe...she lives in England...but, instead of giving up, she has thrown herself into research to help EVERYONE!

She joined up with this older Gentleman, who's granddaughter was Dx'd with RSD years ago....and between the Two....Sharon has sent out Information on RSD, Chronic Pain of all types, PLUS Info she has gotten concerning OUR Health Care...to MILLIONS of People in the World.

They have ALL found ways to help others...which, in turn, helps them forget their own pain and troubles at times.

I found out while in the Psych Ward, that the BEST feeling in the world, is to help someone else that needs it worse than I needed it. Someone who has their whole life ahead of them....but, because of Drugs, ended up at the bottom of the hole they dug themselves.

All you have to do Stacey, is find a way to help someone else.....whether its just one person, or, a group of people!

Reach down deep inside of you, and find out what your strengths are. If you know of ways to help teens, make that your project. Single mothers....and ways that they can get help with their children, places to live, etc;

I KNOW that deep down, you have the talents to help others out with things.....that you don't have to spend ANY money in doing so. All you have to do is come up with an idea....then, figure out who would be the BEST person that could help out.....talk that person into helping....and then volunteer yourself or time, to help keep the idea going.

Tonia

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[Guest guest]

Mark - I too have an SCS since November (and about to have it re-implanted) and have not been told anything about problems with sitting for lengthy periods of time. In fact, for the first day or two, sitting was about the only thing I felt like doing. Mine is implanted int he cervico-thoracic area and it was just too uncomfortable to lie down. The driving thing was an issue only in terms of driving with the SCS on (like was said....possibility of jolts until the lead fibrose/scar in). The main concern was "bending, twisting, lifting." My best to you and keep us posted. BarbaraMark D Boone wrote:

spinal cord Stimulators. The documentation that I received when my doctor first started talking about the implant was that I should not sit for long periods, such as a drive of many hours. I understand that they may not want me to drive, but has anyone had serious problems if they are just riding in a car for several hours.