The Ugly Truth

September 8th, 2010

So many of you out there were supportive, caring and loving as I started going through this journey to health. I received notes, phone calls and e-mails motivating me each and every day. I knew in my heart I was doing the right thing and I wanted us all to have answers to our pain. Without all of you I could never have packed my stuff and left my hubby, my bunny and my dog Pepper to embark on the unknown. I cried a lot but I always made it through and felt renewed each day because I had so much faith and hope inside to carry me.


It all came to a screaming halt one early evening while chatting with a friend online. She asked if she could call me and I said sure, a bit reserved now because the vibe of the conversation changed. I honestly thought it would be no big deal, boy were my instincts way off kilter. She begins to share with me how difficult this decision was and had to consult with her hubby first. Now, I am terrified…….just tell me! I hear the words but they make no sense because how could someone I trusted withhold information so sensitive and personal that was supposed to be between a doctor and patient only?!?


I became defensive, hurt and very angry. I don’t understand how someone who suffers in pain themselves could be so cruel to another. I am now so distraught I call Bill, he can usually decipher my words through all the sobbing……he has had many years experience fine tuning this ability. He calms me down and asks for Dr. Robins’ number. He explains to me that he will call him and call me right back. Well, my second flash of complete horror takes place because he admits to sending e-mails to Trudy, the host of “Living with RSD” blog talk radio show, about my treatment. I assumed at this point it was general terms. Now, I am fuming but decide to go to the source. I contact Trudy online and she calls me immediately, but her show is starting in a few minutes and can not talk long.


Trudy denies everything. She denies receiving e-mails about my personal information, she denies passing it on to a friend and proceeds to explain that the mutual friend is a liar and angry at her and trying to sabotage her show. I am crying, so very upset and Trudy continues to berate the other person, she does not console me, she is removed, cold and as collected as she is on radio. I am a human being, with emotions, hurting and she is just carrying on about the friend that told me. Sorry, got to go Denise, the show starts in 5 minutes…..ok sorry Trudy. She says, I will call you tomorrow.


Now, I am torn. What the hell is going on and why am I in the middle of it? Trudy almost had me convinced that the other person, whom I knew better then I knew Trudy, was just angry and trying to hurt Trudy in some way. I agreed to go to my treatment the next morning and confront Dr. Robins alone, my husband told me I am stronger then I believe I am and that I can do this.


The next morning approaches too quickly and I head out at 6am for treatment number 9 and some serious questioning of the Dr. I walk in and he is acting different. He is calmer then normal, not rushing to get my needle in and proceeds to ask me what was going on. I said I am not sure but it appears someone wanted to hurt Trudy. Then he hands me e-mails he sent to Trudy and proceeds to apologize for revealing certain information about me and his observations about me during his initial consultation with me. Dr. R tells me Trudy said “you two were best friends and I figured she could offer you support” if I told her what I thought. Since when???? I met Trudy for my interview on her show, we had never even chatted before that. Best friends? What? He apologizes again and says “I didn’t know, she led me to believe you talked each day” etc….When I ask for the initial transmissions he sent to her he claims to have lost them (I bet he did, they were too incriminating) but follows it up with Trudy should have them……..Trudy lied to me about all of it. She claimed just the opposite of what Dr Robins has said and what was stated in the e-mails. I am dumbfounded but don’t lead on and just go home after my treatment.


Did I enter the Twilight Zone or something? I had to; after all why in the world would someone who suffers in pain want to hurt another in pain? My only answer is to get accolades for this treatment, notoriety for her show, and look like a hero to all RSD/chronic pain sufferers. Without an audience her show means nothing. She protected her show over having the back of a friend!!! Now, I have breach of confidentiality by the dr, I have hurt feelings from betrayal, and I have to give up treatment that could have potentially helped me and others because I can not trust the dr or Trudy any longer. What other things did he or she lie to me about? Is ozone really that safe? Dr. R always made it clear that he didn’t want attention brought his way, why???? If this is so great, and non-harming in any way, why not do articles and interviews to spread the word in this nation? Just does not add up does it?

I called Bill later that evening in tears and asked him to come get me as soon as possible. My stress was high, pain was up and I just wanted my life with my husband and my own bed back! After a long, emotional call he decided to take the next night off and drive down (360 miles one way) to get me.


I get a note back from Trudy. I told her I was going home and she wrote and said “I have not caused this drama. All I did was give you a chance at getting well. You said the treatments were working. That should be all that matters; You are going to give up a hope of getting better because of something that had nothing to do with your therapy?"


My Reply: “It does have to do with my therapy my personal info was given out and I can no longer trust the dr plus I only see sleep as an improvement not pain.......dr R admitted what he did but if I don't have trust I shouldn't do it nothing is stopping him from disclosing more in the future I see now you don't deny that you lied to me how sad it is that you can't even admit when you were wrong too. This has nothing to do with *&^%$ leaving your show I asked you personally on the phone in tears and you still lied. Have a great life but lying is unacceptable."


She never responded back ever again. When my husband wrote to ask for the e-mail transmissions she very coldly responded “I don’t have any e-mails from Dr Robins anymore”.


The guilt starts immediately. I am letting down friends, family, and RSDers all over! I feel like a complete failure. I was told by some loving friends that “you have to take care of you first and foremost, if they are friends they will understand.” I sure hope and pray they do because if I lose them I lose everything. I need those that get my pain and suffering, I need the support and encouragement from people who truly understand a day in the life of a chronic pain sufferer and know what my psyche is thinking before I speak the words. I can say “pass me the chainsaw” and they get how much pain I am in, or “shoot me now it is more humane” and they know death is welcome over the pain and I see no relief in sight, it doesn’t really mean I will cut my leg off or kill myself……they are merely expressions of how badly we hurt and need distraction and motivation to get through that moment. If they don’t support me I know I will lose all purpose in life. I love helping others, praying for them, offering an ear, a shoulder, a laugh a cry…..anything to make them see they can get through another day.

I am home, have been for almost a week now and battling intense emotions each and every day. I will admit to questioning my faith, doubting our Lord, and not trusting my own instincts because they have failed me. I was not protected in any of this. I set myself up for hurt, blame, failure, deceit and judgment by others. I stand by my original intention to do it for all my fellow RSD sufferers. That is why I finally decided to disclose what really happened. I don’t want someone else to feel this kind of pain and go through the emotional roller coaster that I am still riding. We all have the ability to make choices and decide for ourselves what is best for us, so I am putting that decision in your hands. I am not shutting down Trudy’s show, I never until now even disclosed the details of what happened. I refuse to be like her. It is your choice, you can continue to support her, listen to her show and forget any of this happened and I will not say another word about it or you can stand up and choose to abort her show knowing she is willfully lying to fellow sufferers to promote herself. Honestly, I am “letting go and letting God”, I have to move forward now. I am not cured, in fact my pain is higher then ever and the stress of it all does not help. I need to take care of me now.

Here is to new beginnings!!! As my pastor reminded me today, “when one door closes a window will open”! Stay tuned for future blogs, believe me when I say this psyche never stops working!