Reflex Sympathetic Dystrophy Support Group

Hi Cindy,

I totally agree with everything you're saying. Paula also had a short reality TV show a few years ago that was unbelievable as it showed her stumbling around and slurring so bad that you couldn't tell what she was saying. It showed her having a bad lack of sleep which could count for some of it but she was seriously "on something" and I don't say that as an accusation because I also take pain meds and if she needed them for pain that is her decision. However, several times on TV she has seemed severely "messed up" which I never do taking all the meds I'm taking and I don't know why she is SO unable to carry on a simple conversation without seeming very messed up. Then, she denies and denies taking "drugs" and seems to imply often that she doesn't take pain meds. The problem lies with her not seeming honest in this. That makes her credibility on everything questionable, so when she talks about the pain of RSD it does not seem that believable. And, in this show with Dr. Oz there was the implication that she was now well and that certain supplements led to her being well now. Then, she WAS HONEST in stating that she is a spokesperson for the company that sells the wonderful supplements that she recommends. Not all supplements are the same, blah, blah.

She looks great! All of that does not come easy even if you have money and help. To be in much pain and be as fit as she is I can truly appreciate. I also feel very bad for all she's gone through and do not doubt her pain. I think she has had severe pain for a long time. It's just that this particular show did not show the truth about RSD and implied she was well now from supplements and diet. While those things can be good for us, give me a break. I'm very disappointed in Dr. Oz about this, but I have been disappointed in him for a long time as his show went further and further into "fast ways to lose weighT" and "secrets to looking younger" when he has a rare platform that could be used to promote information that could be more useful in my opinion. I suppose the majority of daytime TV watchers are not in it for educational shows and he would lose their interest and then sponsors, and then the show.

I just wish he would for us with RSD make a segment on how serious it really is and the symptoms, treatments, etc. in a truthful way.

gail

I agree Gail but that is Holywood and how they get their money. I now remember her 1st back injury was when she was a cheer leader and fell hard and had herniated discs from it. I love dancing so I have watched that show for years. She would lean on the other judges to keep her head up. It is so sad, if we went on there and said that green stuff cures aids we would be laughed off the stage. I think I will just keep on praying because I know God will not lie to me and some day he will let me know the reason for all of this.

Hugs to you Gail, Cindy

Oh, Cindy, I am agreeing with you and if I sound like I'm not, I'm really sorry. I was just adding to it what I watched but agree with you on everything you said. Plus, earlier I sort of said that I wasn't sure she had RSD, but after thinking briefly about that I took it back because who am I to question her diagnosis or her life. I know that's how shows are done, which is what I was saying, too. I just wish there was a way for the show to more accurately show what RSD is. Actually this week I was thinking of you and how hard it's been that you have family members who have questioned pretty much everything about you having RSD, and how much it would be hurtful if any of your relatives that have not believed you about things had seen this show and then REALLY not believe you. That was what upset me and this week I was thinking about you and others who have gone through that like I have, but oh well I guess we can't change it. Paula wasn't really given a fair attempt at getting better information out because Dr. Oz talks very fast and often cuts guests off before they are finished saying things. I guess his mind is very quick as are his words. I also feel bad for Paula that she lost her last gig with Simon. It had to hurt her and sounded like it did. I hope she's getting whatever treatments and medications she needs for pain relief and maybe even better, maybe she is in remission I don't know because they didn't use that word.

I've gotta go try to sleep... I hope you are already! ZZZzzzzzzz, gail

We know this may not change much but today we are giving everyone an opportunity to share their RSD stories. It's a special 2 hour show. 11 a.m pst/2 p.m est. A chat room is available during the live show.

This is your chance to speak up. If you have been upset with the recent press regarding Reflex Sympathetic Dystrophy, this is your chance to set the record straight.

Join me, Trudy Thomas and Twinkle VanFleet to discuss what YOU have gone through. The symptoms you personally live with daily; how it has changed your life and how you are managing to live with it.

The best way to combat ignorance is to speak up. Today is your chance!

http://www.Blogtalkradio.com/thebodymindandspiritnetwork/ 2012/05/29/living-with-hope-rsd-awareness

Hugs to all the hurting,

~Twinkle

I will be watching, thanks for doing this!

I was shocked to read Paula Abdul was to appear on the "DR OZ Show" as I thought this "story" was history when her pain doc(s) refuted her claims in a press conference several days following her press conference in 2008-09? That followed 2-3 shows on American Idol where she appeared and was most likely drunk. That year, they at times reviewed both performances at one time. Not this night and the other judges were stunned as she reviewed one contestant's first and second song which he had yet to perform ! It was sad. As I recall the facts, having overheard her pain docs speak of RSD being the worst of all pains (she was/is being treated for arthritis--not uncommon for professional dancers; it is akin to a pro golfer having a bad back), she decided to call a press conference, announce she had RSD and her recent gaffes on "Idol" were due to the powerful meds she was on. The stock of this "smaller" pharm. co that made the arthritis med she was on went up dramatically and even the Pres. of the pharm co (for 48 hrs) thought he unknowingly had a RSD drug! It's deceit however continues to live on through YouTube where a fan posted a video about her hero's battle with RSD (the name may have changed to CRPS over one decade ago but the few docs who really know much at all about it, prefer using RSD. Sadly, too much time is being spent now coming up with a new name yet. I wrote a polite letter to YOUtube requesting that the video be removed. They responded that had sympathy (not empathy!!) but could do nothing as it was owned by the poster. That may be partly true but last week, they disallowed something controversial re: truth so they do evidently have the ability to delete that video. I cringe at anyone going to youtube for RSD/CRPS info as Paula Abdul video jumps out at you (or did for svl yrs.---it was still there last I checked 30-40 days ago.) I wrote her fan who posted the video and pleaded that she take it down, explained RSD to her, gave her a link to Paula's doctors' press conference refuting her claims. (No, I can not my fingers on it immediately, never even getting the courtesy of a reply, I am sure one day, I deleted all in frustration. I am sure I or anyone else could find it however. ) I plan to look and send it to the wizard of Oz. By the way, I am a fan of Paula's and do not think she understands she has done. She is talented but to be dumped by Simon twice (at least) proves she is not among the brightest of bulbs. I think possibly a letter from Jim Broatch, Pres or Exec Dir of RSDA to Dr.Oz with such info would be most appropriate and if able to find it again, I will forward it to him with such a request. I wish

y'all the best. God Bless--Marty

Hi Marty,

Welcome to our group. Thanks for the information. I'd never heard that about doctors coming out and refuting Paula's diagnosis/story. Did you see the Dr. Oz show? Oz wasn't interested in educating his viewers about the truths regarding RSD. It surprised me that he never even made a reference to CRPS, but that's a whole other thing.

I wanted to say that Jim Broatch also came to mind when I was thinking about this, but I've had surgery this week and been behind in everything and don't know Jim personally anyway, so it's not something I've taken on. That's great that you want to send him something and I hope he'll want to contact Dr. Oz with "our" reservations about how the show portrayed RSD. I didn't notice if you mentioned, but am guessing that you are an RSD patient. Are you? If so, how are you? I noticed that you're in Texas. I'm north of Dallas. Do you have a good pain doctor?

Well, thanks again for jumping in on this conversation and anything you can do to contact the Dr. Oz show would be great. If you know a way that "we" could add our thoughts and concerns, that would be great. I'm really behind due to the surgery and going back for check-ups, etc. Thanks!

gail