Tuesday, October 26, 2010

What We Are Fighting For

I received a message yesterday that I cannot get out of my mind. There was something about it that bothered me, intuitively I knew what it was, but I like to give everyone the benefit of the doubt and gave the inquirer ample opportunity to respond. Yet there has been no response. So as I gutted the bane of my existence this morning, the closet in my office where everything that does not have a home gets SHOVED and SMUSHED and PILED into, this was whirling round and round my head and I got a bit steamed up and have decided to address this publicly. I believe this attitude personifies so much of what we are fighting against. It represents what I have intentionally worked so hard to NOT make The Fibromyalgia Fun House and The Chronicles Of Fibromyalgia and ultimately The Fibromyalgia Crusade about. Instead of paraphrasing I am gonna give you the verbatim (I have left the typo's intact):

Inquirer: "Let me ask you a question...and I want an honest answer, if you please.... If I can get you out of FM pain in one month would you be willing to try? and it's risk free....if nothing happens you'll get your full money back,unconditional!
2nd part: Now if you were to be pain free....would you accept that it can be done and put that on your blog...?
I'm extremely curious (and this is not directed towards you in particular) about so many people who profess to be in such agony and brain fogs and can't sleep etc,etc, yet when you offer them a proven way out they refuse , why?
Is it becasue they have seccummed to the ilness and feel that if they loose it they will have nothing left . I'm serious , i just don't get it. Maybe you can shed some light in my direction.
I'll appreciate any comments that you can offer pro or con.
If you were to become pain free and stayed that way....would you join me and a few others i know of that are pain free and not dependent on drugs anymore would you to be an advocate for that?"

Leah responds: "Oh that's a complex one. It would seem a no-brainer but you have to realize you are dealing with an emotionally abused patient body and I do not use that term lightly. They have been dismissed by not only doctors but often their own families and treated horribly and are a scared and cautious bunch. Don't know if you have Fibro or not but the pain is unreal and you become a desperate person trying to hang onto your life and failing at it and often times there is no one around to help, support you. It is terribly sad and wrong and that is what I am working so hard to change.
So when offered a "magic cure" they would wonder 1. Is this for real or scam and 2. Why would this guy have it and not my Dr.?
So do tell about this magic cure all! You have intrigued me!"

No answer. So I guess I got the answer to MY #1! But it is the phrasing "Is it becasue they have seccummed to the ilness and feel that if they loose it they will have nothing left" that hooked me, snagged at my heart. Where do I even begin with this one? I do not see 1 single person in our group that has succumbed to the illness. I see people that at times succumb to the exhaustive fight every day is, but that is just for a phase. What I do see are strong and brave fighters. I see proud women and men that are trying to swim upstream against a waterfall! I see people that indeed have nothing left, but not for lack of trying on their part! Does this person have Fibromyalgia? If so what is this "proven" magic cure that we all just want to hide behind our excruciating pain and miserable reality to avoid?

And I was reminded anew why I am doing this, carrying the Fibromyalgia cross for all to see, building an army and marching us to victory. This illness is REAL, takes a lot of hard work and a very specialized and individual protocol but can be managed. The attitude presented above negates the very reality of Fibromyalgia as a valid and and serious condition. The attitude above is why we are having to fight so hard to be taken seriously! So I am still waiting, dear inquirer, as to what this "proven" 100% money back guaranteed "cure" is? I am still waiting...

Thanks for joining,


  1. You go girl. You handled that well. To further add to the point, the inquirer as you call them, loses my faith in their cure all as it were, because quite frankly, their posting was so poorly constructed (sentence structure, spelling errors, etc). Seems to me a scam.

  2. Hi Leah, when I first started looking for a Fibro group on Facebook, I stumbled on a lady who seemed to running a nice group. I friended her, and very soon Red Flags" started popping up. She said she was a "Life coach" who had beaten Fibro with the right attitude, diet, and herbs (mainstream medications and physicians are BAD) she did these conference calls, and hardly charged ANYTHING..just enough to cover her expenses and feed the dog. (ok, I made up the dog part) Well, my Scam-O-Meter went off, and I unfriended her, but I kept getting these weird, somewhat paranoid messages..she just wants to do good for people, some people with Fibro don't really WANT to be well, If they did they wouldn't question the extremely low fee she was charging..it breaks her heart that people doubt her when all she wants is to HELP her fellow sufferers. You get the picture.

    I wonder if your Inquirer is the same person..it sure sounds like her. For one thing, it sounds as tho English isn't the Inquirer's first langauge, and the person I'm talking about is Swiss. Her name is Maja Iten, and I still have some messages from her. The last one I got said this was her LAST MESSAGE on Facebook. she was taking her marbles and leaving because everyone was so ungrateful..

    I'll bet a slice of swiss cheese it's her..


  3. I am stricken by the fact that someone who professes to be the "messiah" of the Fibromyalgia cure has such poor use of the English language. This person cannot even spell, why would I entrust my pain wracked body and fragile psyche to this individual? We have Fibromyalgia you idiot, we are not ignorant fools. Fibromyalgia knows no boundaries.It creeps up like a enigmatic fog on unsuspecting victims regardless of age, education,or financial disposition. Crushing dreams, breaking hearts, and breaking families.
    The sisters and brothers, fathers and mothers who live with this syndrome on a daily basis live from moment to moment filled with hope that one day a cure for Fibromyalgia will be found. In my mind each one is in his/her own right a hero...living on faith, hope and every bit of strength that they can collectively muster to be a part of the solution. Being turned away time and time again from a multitude of "health care institutions" as hypochondriacs and fakers, being accused of being lazy, mentally ill, and a myriad of other "diagnosistic garble". Yet, still we continue to fight! Fibromyalgia exists! It is not imagined or concocted. Not one of use has chosen this for ourselves, it sought us out indiscriminatley. The resistance to acknowledging Fibromyalgia as a viable medical condition is a travesty and embarrassment to society and the medical profession.

    Tricia A. Kennemer
    October 26, 2010

  4. Scam Alert for Maja Iten:


    I feel like there's a whole new world out there for me now I have found your blog only two weeks ago. I dont know what the future for me and my fibro symptoms will look like, but now I know that it will look different from the past. Thank you for doing what your doing.

  5. Leah,
    I ran across your blog on FB, and have been following it. I have enjoyed so much reading it. I have not been diagnosed with Fibromyalgia, but my pain is very similar. I can not say it is the same, because no one pain is the same, and no one can truly feel another's pain. I have been diagnosed with Peripheral Neuropathy because of an adverse reaction to Levaquin. For a while I was hanging out in the Fibro groups, because one doctor suggested that might be my problem. I have all over pain, and had all the tender points. However, nerve conduction tests proved something different, which took the Fibro diagnosis away.

    I have had others email me with such claims, and it really irritates me. I would do anything to get better, but unless they can regenerate nerves, I don't think it will help.
    Thanks for sharing all of your stories.