REMINDER == We Can Choose To Stop The Nonsense!

Discussion in 'Fibromyalgia Main Forum' started by S-Elaine, Jul 30, 2009.

  1. S-Elaine

    S-Elaine Member

    Hi all,

    I came over to this side of the Message Board to see what the commotion was about.

    I have the “default” of my ProHealth profile set to where I receive a reply message indicating a response was added to a post I previously wrote.

    My personal time has recently become consumed by other medical issues, yet I am still part of the ProHealth Community.

    I apologize upfront if I seem to be a bit “grumpy”.

    I am in the process of addressing treatment options for Cancer and perhaps am a bit tired and more worn out than my usual.

    A story regarding improvement and recovery causes such controversy.

    Again, it is the same subject matter that has caused problems before in the past. Have we not learned from our prior experiences???

    We all know better where treatment that works for one will not always work for another.

    However, on the other hand, it is not our place to dismiss it and accuse another of not being legitimate.

    Sure, we can ask for further information & we can agree, as well as disagree based on our own personal experiences or on the knowledge we have.

    If you are questioning the intentions of the USERNAME, then do the appropriate thing and report the message directly to ProHealth.

    ProHealth will deem what is suitable versus what is attempting to take advantage of the Members of the Community.

    There is no need for the back and forth personal put downs.

    I recognize USERNAMES from many years ago where their input is EQUALLY as important as to those who are newer to the Message Board.

    As I scrolled through the thread, I can see where some feel the information is helpful and where others can perceive it as something else. The message started with the poster stating they will give additional information if you need it.

    Our minds are open to improvement, recovery, wellness and restored health.

    So, what works for some may very well not work for another individual. Our medical conditions are not cut and dry. However, we never know what is going to help us until we have exhausted all resources.

    I personally know I do not have the answers as to why some improve and some do not. I know about my journey in going from 100% bedridden to a 2 and ½ years of a FULL REMISSION and then back to a slow gradual return of all symptoms. Improvements have been made along the way on my end.

    I have CFS as well as FMS. When you combine both conditions, it can become more complicated. I am fascinated by stories from those with strictly Fibromyalgia in addition to those with CFS/ME. I learn from both.

    Then, I read stories of those who have both conditions like me and additional medical situations on top of that as well. I research everything first myself after hearing about a new treatment and then I take it directly to my Specialist.

    There was a point to my post, and I should wrap up this message by simply SUMMARIZING MY POINT, as I see I have rambled on quite a bit.

    ----- ***** I just wanted to suggest ***** ------ We can choose to stop with the “Nonsense” and individually forge ahead seeking out our own improvement in what we learn here at the Message Boards or what our Doctor's recommend.

    Supporting one another would be GREAT, yet I will not ask for the impossible!

    == Elaine[This Message was Edited on 07/30/2009]
  2. S-Elaine

    S-Elaine Member

    ROCKY76 ===== Thank you for the recommendation. I will discuss that with my doctor and see if I can add it to my current regimen.

    CFS SINCE 1998: ( --- It is a lengthy read.)

    My 2 and ½ years of FULL REMISSION was approximately 6 to 7 years ago & my diagnosis with Cancer has been recent. (However, with the exception of “cancerous cells” that had previously been removed twice before with lasering sessions all about 1 year apart from each other.)

    The dates do not coincide, and I have not started on treatment yet for the Cancer. I need to make my final decision within the next 3 weeks.

    I have taken on as many “Alternative” solutions in preparing my body for what it may go through next.

    Yesterday, my POINTS in writing my post were to anyone who may be interested:

    == We are all different.
    == We have different needs, wants, degrees of our illnesses and function at different capacities.
    == Some have the need to & must closely monitor their levels within their bodies and search for facts, findings, reasons and medical proof.
    == Many of us will educate ourselves by reading books specifically related to our medical condition.
    == Others go after the symptoms and address them in various ways.
    == We have different personalities, opinions, view points, outlooks, and express ourselves in manners which can at times be misconstrued since we are only seeing the written words.

    With all of that being said, I simply see no reason for personal attacks …… PERIOD!

    Discussion forums are extremely important and beneficial. Many of us learn from one another or we may try a Treatment option because we read about the success rate here at the Message Board.

    For those who do the “bullying” or “attempt to tear another person down” are people who I choose to not interact with here at the Message Boards.

    Certain comments would not go unnoticed if I were to meet someone like this in person. I would defend myself, firmly stand my ground and continue to make my own remarks until I have fully exhausted the individual.

    When I posted on the THREAD above called ------ “What Worked For Me”, I was asked many questions as well.

    I offered up as much information as I could & have always stated …… "This is just my story".

    BOTOX INJECTIONS for my daily migraines were the only treatment I responded to.

    Doctors were never able to explain the reason for my Remission. It was a mystery to them.

    I had questioned this as well for such a long time. I never found out why and there was no “medical proof” to substantiate what had occurred to me.

    My previous doctors all decided to chalk it up to ------ “She was mistakenly over medicated and that possibly did cause exaggerated signs or rebound symptoms”.

    I was taken off ALL prescription medication, with the exception of 1. This was because I was very medicated and in a Hospital Treatment Program, due to other surrounding circumstances. The Team of doctors wanted to see what exactly were they dealing with. Was it Fibromyalgia??? Was it Chronic Fatigue? Many labels were given to me back then.

    I crawled on the floor in my house to strengthen up my leg muscles & then moved on to using a Walker. I’d have races in my backyard with my Father in his Electric Wheel Chair and me with my Walker. Eventually, I was able to get rid of the walker.

    During my Remission, I started to exercise on a regular basis. Time went on, and I resumed my former life for an extended period of time.

    Then, I slowly started to see the pattern of the symptoms returning one by one. It was the exact same pattern the second time around.

    For the second time, I was much better prepared because I had formed “coping skills”.

    I searched high and low for true Specialists and started making progress with Doctor #17.

    Fatigue is currently my biggest stumbling block. That one specific symptom is the issue I have not been able to get rid of. It is greatly improved than the way it was years ago due to changes I made and things I specifically learned about MY body and what it responds to.

    Another woman I met here at the Message Boards shared with me her Fibromyalgia seemed to improve during the time she was having Chemo.

    == Elaine
  3. Jude

    Jude New Member

    S-Elaine, I am another long-term member but I don't post much any more. I specifically wanted to reply to you because I have done Chemo before and have FM. I think that our reaction to Chemo with FM may vary as much as any other treatment we do. We are all individuals. I am a four-year breast cancer survivor. Fibro has been a problem for me since 1997. I was in treatment for fifteen months, four different drugs, none of which helped my FM. The fourth drug that I was on was a clinical trial and that is the reason that I am here today. However, many of the coping skills that I learned from having fibro was an asset as I fought my battle with cancer.

    I wanted to let you know that we can have different experiences while on chemo. Even people on the same chemo without CFS/FM can have different experiences. This I know first hand as I have done time in the chemo room. The drugs did leave me very fatigued at the end. I did finish treatment and I was still on my feet. That is a victory. The fact that I am alive today is a miracle. You are young and that is in your favor. Good luck.

  4. daylight

    daylight New Member

    Hey sweetie ,
    I was just reading your post and wanted to let you that your in my prayers . Chemo is so hard to deal with . I'll praying that you get your strength back and healed of that DD.


  5. jmq

    jmq New Member

    I was just thinking about you and could not find any recent posts from you on the chit I checked in over here...and there you were. Now I feel relieved!! Have you made any progress on what you are going to do yet? I have you in my prayers

  6. jasminetee

    jasminetee Member

    It was nice to see u in Chat. I am sorry you have Cancer and I hope you have a short fight with it and a speedy recovery.

    Your story with your dad is very inspirational. I think of it often as I deal with my disability.

    I understand what you're saying here and I feel similarly. It's good to see you here. Thanks for posting.

    Hugs and Prayers,
  7. S-Elaine

    S-Elaine Member

    Thank you all for support.

    My own personal approach to dealing with Cancer for myself is ---- it is simply another thing I need to address & my coping skills are serving me well.

    I am very humble when it comes to feeling my Journey can be viewed as "Inspirational". Any credit really goes to my Dad for being persistent and not giving up on me. I have literally memorized all of the things he said to me many years ago.

    I will bet this Cancer, and I refuse to let it get me down. No way, that is not an option for me. There is too much in life I still want to do.

    I have done a great deal of research on my own and have heard many real life stories too. I insisted upon additional testing because I wanted to know if the Cancer was restricted to only one area, or had it spread.

    With all of that, I am going about my days as I normally would and making sure I have FUN as well.

    Laughter is very important & so is a positive attitude.

    I wrote more details over on the CHIT CHAT Board on the post ---- "PORCHLIGHT IS ON VOL #405", if anybody is interested. Open that post, scroll down, and you will find my update.

    Most likely when I start my Cancer Treatment I'll leave updates periodically on the CHIT CHAT side of the Message Board.

    Again, thank you all for your kind words and encouragement.

    == Elaine[This Message was Edited on 08/01/2009]
  8. Catseye

    Catseye Member

    Hi Elaine,

    I haven't been on here much since I got a life again and I don't know much of your story but just wanted to mention 2 things that you should research for cancer: graviola and kangen water. Both have been shown to kill cancer. Maybe you already know about them! Just wanted to make sure.

    good luck
  9. fibromickster

    fibromickster New Member

    Your welcome.
  10. S-Elaine

    S-Elaine Member


    I have no idea what your comment is regarding, especially since my post does NOT say we should not express ourselves or speak our minds.

    THUS, that is why I specifically stated Discussion Formats are extremely important and highlighted the reasons for my post.

    Perhaps you overlooked the part of my message where I break out in the ways we are all different and at times may misunderstand one another.

    Sharing our personal stories or journeys with our illness is where we can learn from one another.

    Did you have a direct question for me???

    I have no problems standing behind what I wrote.

    My post makes reference to “personal attacks” ---- not the First Amendment.

    Feel free to specifically point out where I ever wrote we no longer have the “right to freedom of speech”.

    Factor in the “Rules To The ProHealth Message Board” and in that section written by ProHealth, not me, is where some rules are established.

    Those would be the rules you and anyone who joins the Message Board agrees to.

    Perhaps you may want to take your issue up directly with ProHealth. They established the rules and guidelines. I did not.

    == Elaine
  11. fibromickster

    fibromickster New Member

    Don't bother getting yourself upset over this, she/he must of woke up on the wrong side of the bed to bring this all up again or is the type of person that is getting bored because no one has started something lately. Geez. She/he needs to read your post again thoroughly.

    Your post was awesome and intelligent and heartwarming. You are the best and you are very much loved around here.


    [This Message was Edited on 08/07/2009]
  12. fibromickster

    fibromickster New Member

    Oh by the way Leaknits, your apology is accepted. LOL
    [This Message was Edited on 08/07/2009]
  13. gapsych

    gapsych New Member

    I think this post started going in a couple of directions and the comment may not have been for Elaine but I can not speak for Leaknits.

    Nothing wrong with a post going in different directions. These mix ups happen, especially with fibro fog and if we put it in perspective, not a huge deal.


  14. fibromickster

    fibromickster New Member

    LOL, I am with you on mysteriously showing up at the hospital. We could go to the costume shop and rent a couple of "sexy" nurse's costumes. I am sure they will let us in to take S. Tyler's temperature. LOL

    Have a great weekend Elaine. See you over at the porch darlin!!!!!
  15. springwater

    springwater Active Member

    agree, the threads should be one for support and discussion for CFS sufferers and how they can get better and not personal haranguing.

    Can i tag along with Mickey and you on your hospital sneak visit to stalk S Tyler. Want to see if those lips are still as luscious as they were when he sang 'Crazy'.

    God Bless
  16. S-Elaine

    S-Elaine Member


    I appreciate you commenting on what you thought had occurred & you did include you could not speak on behalf of Leaknits.

    Since Leaknits message “mysteriously” disappeared, I would tend to believe the comment originally made was directed towards me.

    Why delete a post otherwise?? ( --- This is just a rhetorical question. --- )

    I’m sure the message was not deleted on ProHealth’s end.

    I would like to reiterate no where did I write of state anything that Leaknits made reference to in the post they now have deleted ------ “The rights to the First Amendment have now been suspended. Thanks for the heads-up.”

    My words were twisted in a manner in which the point I was trying to make was misconstrued.

    My original post is not to “tell people how to act or behave”. My post was to make a suggestion as well as list the ways in which we are different.

    Am I pushing the envelope here by pointing this out???

    Yes, perhaps it can be APPEAR that way. However those are NOT my intentions.

    My intentions are:

    == To comment the post mysteriously was deleted. I am not the only one who saw the original reply since other people commented as well.

    == If there was a mis-understanding and the post was not directed towards me, then one would usually reply with a correction or clarification.

    What happened was what I would place in the category similar to “Nonsense”.

    It is a waste of time as well as energy. I enjoy spending my time in a more constructive manner.

    We are not forced to reply to messages we do not agree with. We take responsibility for what we write & we hit the “submit” button.

    Normally I would never point out this observation. I’m doing so due to the critical or sarcastic comments some feel compelled to write when they do not agree with a message that was posted.

    Thank you,
    == Elaine
  17. gapsych

    gapsych New Member

    Wow, I must have missed something. Sorry you had to go through that.

    I have not found your post offensive.

    Take care and am sending healing thoughts your way.


    [This Message was Edited on 08/09/2009]