as long as there has been a diagnoses:
RSD, or CRPS Whatever....

I've been in this "Circus World Since 1983".. Has anyone here been there this long? (I'm NOT trying to set a record, just trying to see that we agree)?

I have a friend or two that have had it a long time, and YOU are many of them.

Yet,
Don't it still seem that, we need to "Search Out" doctors who are knowledgeable about our malady?

Don't it seem that when we find one who is "knowledgeable", that we still are on a "wait and see" basis? Still Kind of "Test Dumbies"?
When will this change?
What we do, is Not Only for Ourselves, but for those who come after. Understand, If I were the "One" with RSD, I would never wish it on my worst enemy (and, I've made it a point, to have none((enemies)).
So then, what are we to do?

WE must be STRONG, And CARRY ON!
From E'Clapton's song, "tears in Heaven", We don't belong here, in heaven...

It's NOT as if we have "High Blood Pressure", or, worse, Even let's see?
Um.
Colo-Rectal Cancer?

If you have one of those.. You get "rushed in to a drug regimen" , OR
Into surgery and Chemo.

RSD/CRPS, Nope.
We're still "Testing" the waters...
And, some doctors want to write that "ultimate Paper" on it.
We see that on the Net and, we appreciate it. It "Validates us".

But, this Bastard of a disease (sorry Ali), (My heart goes to you, mostly, our child!)~!
is just that!
It hides.
It changes shades.
It changes faces, and it changes "symptoms".
We must keep a "journal of pain" to take to the doctors, because we get "RSD BRAIN". We forget Every thing when we're "On the Spot"!
(Our Attorneys had better understand that too!)

How the hell do we know how to describe it?
We have RSD BRAIN!

So then,
let the suggestions begin!
(I hope and Pray, that this thread will last, a long time!)

First I'll say this.

Once you, YOU decide that you have this, (I knew before ANY doctor diagnosed me, back in the 80's, thanks to a brochure from the rsdsa.org)
(Consider them in your will, for a small percentage, and ask your family as well!).

Back to the point,..... Uh Oh! rsd brain!

In 1983-1989 (my diagnoses)
7 Years for a diagnoses. Thought I was losing my mind. I grabbed Dr Schwartzman, and hugged him. I was in tears, not so much because I was sad to have this despicable disease, but, to know I WASN'T LOSING MY MIND! (As those closest to me, would have made me think). And, those are all long gone!!
Part and parcel of this disease...


We are at a beginning inception, conception, origination, genesis, emergence, starting point, launch, outset, Oh!
Did you see I checked my Mac's Dictionary? Thesaurus?
I did.

So, I thought I was near the beginning in '83, what I realize now, is that not much has changed.

We've got to go to RSDSA.ORG and Buy those T shirts!
Bumper stickers!
Posters, whatever the hell they've got!

Nobody knows what "RSD" Is!

Hell, we can't even decide what to call it!!!
Craps or RSd!/????
HUH?


So folks,
WE have GOT TO MAKE A GROUND SWELL MOVEMENT NOW!
NOT LATER, NOW!

It's Up TO US, TO EDUCATE THE "dumbpublic" about RSD!
I've studied "marketing."

Do you know how many times a person is "bombarded" with a single "slogan, or Logo" everyday? Just to get them to remember it?

iPhone
Windows
I Love It!
Like that....

How can we "Break RSD Out?"

Just keep wearing those "Hip" clothes,
and bumper stickers,
and we've got to call on the rsdsa.org
not only to buy those things,
but to bring us MORE!


I WANT TO WEAR A POLYPROPYLENE T SHIRT THAT HAS RSD PRINTED ON IT!
EVERY DAY!

That's at least 2 shirts ! (Haha teasin'g didja get that?)
I need 6-7 at least!

I vote that we ALL buy 5!
OK, 3-5.
We do wash.

But, we've gotta propel this MONSTER into the public's eye~!





Thoughts?



p

Great stuff Pete.

I'd like to recommend that everyone here add the link RSDSA to your Facebook or Myspace account. I did so and asked all my family and friends to donate to them.

Perhaps we could even consider adding RSDSA.org to the signature of our personal emails for an even larger ground swell.

Thanks for the inspiration!

MsL

That's really easy to do.
If I were smarter, I'd show ya'll how ta do it!
But the RSDSA.org is All Over My Facebook page!

Thanks, MSL!
we've got to keep this going!

I'm going to send this entire thread, to my doctor (The GREAT Doc KNOBLER), and to those "close" to me.....

Please, contribute your thoughts......

P

Once again, you have made me smile as I feel inspired with the way that your words come alive on the blog. Bravo!!!!

I am 2 yrs & 2 months since my first injury that manifested into RSD/CRPS I. My PM doc has helped me with the pain;however, he is not up to date on the fact that RSD can spread. That makes me worry, as this doctor dictates reports on my condition and then sends them to WC, and my atty. If RSD doesn't spread, what does PM doc think is happening to my uninjured leg, both hips, spine, shoulders and hands???

It is very frustrating to say the least. If only the ignorant medical profession, for ex.,a MD,or a WC atty., could enter the RSD Twilight Zone for a 30 min. episode.
Specifically, that a MD and a WC case-manager/atty. could be RSD patients, and experience the medications with all their side effects, stages of misdiagnosis, painful stages of RSD, and the doctors that look them in their faces, and tell him/her.."it is all in your head"...don't you think there would be an increase in research and development for a proper diagnosis tool, and then a cure???

THAT WOULD BE CRUEL AND UNUSUAL PUNISHMENT......

GREAT POST,PETE

Hey Pete,

One of the things happening in OH is a Education and Awareness Bill. I had the opportunity to testify before the senate last fall. The sponsoring senator resigned and his replacement allowed the bill to stall. I think we have him back on board and he is going to start the process moving again.

If you live in OH we could use your support. You can PM me and I will give you the contact information for the sponsoring senator. Some states already have passed bills if yours hasn't you can contact the RSDS association or PM me on how to get started.

The RSDS Association is worthy of all the support they recieve.

Take care,
Sherrie

At least you're passing awareness bills! That is something!!!

Where I live, this odd tiny itty bitty part of Europe (Belgium), they are so behind in everything they're still using the wording of some 50 odd years ago when "it" was called "algoneurodystrophy", and when even less was known about the condition. It certainly wasn't an accepted physical condition then - but nothing has changed! The laws about refunding things to disabled people didn't move along with the times. That means that people are pretty much on their own when they get this or any other kind of disease. Only 6 pathologies are okayed in the healthcare law, if you get anything else, or are in an accident and are injured pretty badly, you fall out of the net and are left to get your aids yourself in any which way possible. It's far worse than having just RSD added to the picture here, far far far worse!

Hey Marleen,

I'm sorry disability care in Belgium is so far behind. The stress that a chronic health condition puts on a persons finance's is hard.

Several months ago my insurance company tried to cancel my benefits. They said my condtion is mental not physical. They only cover mental conditions for two years. All my doctors wrotes letters documenting it is a physical condtion my benefits have been extended. I'm still being covered "Thank God". I have been denied coverage by the governments social security. Like most everyone else I had to get a lawyer he is working on getting me approved.
Take care,
Sherrie

It really seems to be a sad state of affairs. Some of us get treated like "Lepers", by the medical community itself! Those who are responsible and in the business of taking care of us. Then, when friends and colleagues are disbelieving, that just rips me.

So, just that we can wear a T-Shirt, gives more credence to the fact, that a thing is true, and real.
Maybe, we should advise any new-comers to wear an RSDSA.ORG T-shirt to their Doctor visits? hah!

Yep, time to order a new t shirt!

pete

I agree 100% with you pete! That is such a great idea!
I have had RSD for 7 years now and it took doctors to dianose it 3 years. If that wasn't a living hell for 3 years of not knowing. Now I know and i still don't feel any better. I have denied disability in my neck of the woods 5 times and working on a 6th time of trying. I have had umpteen docs tell me that rsd cannot spread. I know that it can do to all the research on the internet and reading books.I want to know everything out there that is to know about this monster of a disease that is not suppose to spread! I am so tired of docs and there high degrees saying that it can't spread! I don't care if they think they are all high and mighty this is OUR lives they are messing with NOT theres. I am willing to buy t-shirts,bumper stickers, magnets and whatever else there is out there to try and make people aware of the disease. You might think that I am crazy but i did buy the little spoon pin for the "Spoon Theory" which I think is really neat. If any of you haven't seen the "Spoon Theory" you really should take the time to read it, it makes you stop and think and it made me cry. I feel the whole thing is true. I carry the spoon pin on my purse and a lot of people wonder why I have it so I explain it to them in short term and if they want to know more about it then they can go home and look it up on the computer and they will then see why I think so highly of the spoon and how it is associated with our disease. Thanks again for the inspiration Pete! Keep the GREAT work up!

My contribution to the "gettin' it out there" and education of the masses is through what I do best, writing! :-D

I started my freelance writing career 2 months ago, but have loved writing and have been writing my entire life pretty much. I publish articles on an internet site. So far I have written 7 articles on rsd with many more to come. I have 2 more I did today which it looks like I'll be submitting tomorrow. :-)

I've had a couple of people leave comments that they had never heard of crps before(no surprise there)and they stopped in to read my articles and learned something new. (I do not use the letters rsd, I use crps. Reason being is because that is the "new" name and has been for 14 years now.)

I'm a long way away from running out of articles on rsd, so I will continue on educating the masses one person at a time.

Hugs,

Karen