The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 165. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    pinkydo123 wrote:


    You're journey and you're story are unique to you.No one can define it.Keep posting because it give's other's hope.

    You are sbsloutely right, Pinky, in saying no one can define our experience.  However, no one can know in the sense of "prove" God healed them.  Throughout my ministry, I had to deal with the debris left over when someone who knew God's plan and/or action had just stomped all over the soul of another who wondered if God's plan for them had just been a big "F*** you!"  I've seen it on this board time and again. I had a letter shortly after this individual had posted and I'd made my initial reply.  Someone else who just feels a little beat up by this person's claim.

     

    There aren't many things in this world that make me fighting mad, but this is one of them.  They are picking on those who are in a precarious position in their own faith journey.  Because I've been as aggressively outspoken as I have been on the subject, I honestly believe there is someone out there who's tried to take me on before and now, occasionally, sends people in here to try to get others riled up against me.  There have been a few times the arguments have gotten unnecessarily bloody in the past, well before you arrived.

     

    There seems to be a pattern:

    1. The new person comes to a thread I follow and says something about how Jesus (God) saved them.
    2. I respond.  This time I did so rather blandly.
    3. The person responds to me and no matter the level of my response and, even though they've just signed on and posted for the first or (sometimes) second time, says they've read my threads (or have been warned about me) and expected me to take issue with them.
    4. They make disparaging remarks about my faith or faith journey and ask me anything from one question to a series of questions.
    5. I reply.
    6. They come back and say they don't like being attacked.
    7. They disappear, having never posted anywhere else.

     

    This individual has made a total of seven posts.  They have all been on this thread.  S/he has never posted on another thread or forum at this site.  I doubt s/he ever will.  If you notice, this individual followed the pattern perfectly.  The only thing we don't know, yet, if s/he will or will not return.  If s/he does, I dount you'll see a long-term commitment to the community.

     

    Now what's the purpose in this?  I imagine it's to shut me up by, eventually, embarrassing me into shutting up.  Or by making me seem a raving lunatic to the community.  I mean, look at what s/he's accomplished in four or five posts.

    • S/he's established that Tex does this all the time by saying s/he's read my posts and expected my response.
    • S/he's question whether I'm a true believer by pointing out how bitter I am and how s/he wants me to be "Happy in the Lord."
    • S/he then accused me of calling him/her a liar followed by saying I attacked him/her.

     

    I don't know if the disappaearing thing at the end of it all is just because they've finished their objective in coming here or if it's also supposed to leave the message: Well, Tex ran off another one.  But it's part of the pattern no matter what.

     

    Basically, these so-called "Christians" are so uncaring of other people's feelings that they insist on bludgeoning some who have lost loved ones with their "God loves me sooooo much!  But I don't knw about you," message.  And they tend not to like someone trying to spoil it for them.

     

    Yeah, I might be paranoid.  But as I quoted earlier, "Just because you're paranoid doesn't mean they're not out to get you."  Still, I've seen this scene repeated so many times, I've got to believe it ain't just paranoia.

     

    True, a 12 year survivor can give all of us hope.  But the second they add, "God saved me," they can do far more damage than the hope they create.

     

    Blessings

  • 166. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    The transplant forum is right here on the LLS boards.  Just look for Blood and Marrow Stem Cell  Transplantation on the main menu.  Or just click on the red text.

     

    Is your husband on any WBC growth stimulator or is he experiencing a drmatic increase in cells?  For some reason many folks seem to experience bone pain in their shins when they're experiencing rapid cell production.

     

    Of course, it could be a million other things.  Like I mentioned to Cecelia, it could possibly be unrelated to AML or SCT.  Chances are it is, but we do have other things happen to us in this life.

  • 167. Re: Any AML Survivors please post here
    trvlnfem Registered Users
    Currently Being Moderated

    Nicole, I understand losing your mom is one of the most devastating losses one can have and you may feel the pain for many years.  But we do wish you a better 2010.   It is not trite to want for someone to have an ease in their burdens.  We all have very negative things that have been overcome or we are overcoming now.  But I believe that the world reflects back to us exactly what we focus on and to focus only on the negative will bring for me only more negativity.  The only way I can stay out of the negative, depressed thought is to make a Gratitude list and remember what I have coming in.  Also I know my mother would not have wanted me to struggle for long periods of time after her passing.  Your mother had many blessing I imagine, at the very least she had a loving daughter as her best friend.  I wish my daughter thought of me that way, instead of as a chore she has to help along the way.  Losing someone to cancer is not an easy challenge to face.  No one on this board will ever be the same because of AML, but that doesnot mean we cannot adjust to what is now and still be angry about this disease.  I wish for you a ease in your pain and loving memories of your mother.  Cecelia

  • 168. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    Oh, I can remember that.  If I got a sniffle, if I was a little more tired than the day before, any number of things coud make me think I was in relapse.  After a while, though, I just got bored with it.  I hope you do, too.

     

    Have you seen a physical therapist?  They can often help with pain and mobility issues.  They can do some good even after the condition has become well set in.  Also muscle relaxers can help sometimes with joint issues.  I broke my shoulder a few years back.  After surgery and PT I still feel a lot of pain almost daily.  When it gets too bad, I take a muscle relaxer and that helps tremendously.

     

    Blessings

  • 169. Re: Any AML Survivors please post here
    trvlnfem Registered Users
    Currently Being Moderated

    Tex, thanks for the response.  I did mention the pain pills, I did forget to stat I take a muscle relaxer daily, Flexeril, mainly for leg/groin cramps, but I am sure it helps with the muscles around my joints.  I have not been to a PT, but I do go to a chiropractor/acupuncturist periodically when the pain gets on a roll and won't let go for two or three weeks in a roll.  Money is an issue now.  Ihave only medicaid until June then Medicare will kick in (after my 2 years on disability).  Hopefully, the money issue will change after the Medicare starts. 

     

    FYI I was just reading the S Somers thread.  I have a new respect for you  and I find your honesty from your perspective refreshing.  C

  • 170. Re: Any AML Survivors please post here
    gonebeyond Registered Users
    Currently Being Moderated

    Tex,

    Please.  I came to this site to communicate with others with Aml or have loved ones with aml.  Please just get off my case.

    I believe what I believe.  I know what I know.  I am not drinking your kool-aid.

    No one sent me to this site to bother you. I don't understand why you are  mad at me.

    You called me a lot of names and you  just did not seem open minded at all.

    The thread I read was just a few post before mine.  I read several of the recent post before making my own first post. I did not know I had to have your approval before becoming a participant in this forum.

    My heart had gone out to the person who was on the receiving end of your rantings. I only knew of one other person you had treated that way.

    As far as me making disparaging remarks about your faith or journey, I think you got that one backwards.  Not sure why you can try to condemn me for my faith but I can not ask about yours.

    I did feel attacked by you.

    I will not allow you to run me off of this site.  It can be a very valuable tool if we don't attack one another for haveing different beleifs.

     

    I know of no conspiracy against you.  I do not even know you.

     

    You made me feel like you would have been happy if I had already died since I have a different understanding of the Bible than do you.

     

    I know God is Love.  I know you and I need to kiss and make up.  I know  Jesus visited my hospital room and I know what message he brought. 

    I am not the only one who has seen Jesus in the physical form.  To me it was a miracle. I know you said it was not a miracle.

    If you knew me and knew how undeserving of God's love I am you would too  agree that it is a miracle that God sent his son to me.  His son who carried me through the tough times like the poem "footprints in the sand".

     

    As far as death goes.  It is a  part of the journey us mortals go through.   None of us will get out of this world alive.  As a mortal I wish no one had to die.

    But as a Christian I know I will be better off in the next world.  What a day of rejoicing that will be!

     

    And you missed my whole point of my inital post by wanting to be angry at me.

     

    Gonebeyond           

  • 171. Re: Any AML Survivors please post here
    pinkydo123 Registered Users
    Currently Being Moderated

    It's toooo hot in the kitchen for me Tex.I'm sitting this one out.You have given me and Todd hope as well Tex and I'm really glad that you are here for people suffering from this disease.I feel nobody can define anyone's journey.It is unique and spiritual to them in a very,very personal way.Now I understand AML is a life threatning disease.I myself am not facing it but my loved one is and the conversations that he has had with the master of the universe are thing's he has not shared with me.Facing his own mortality at such a early age has got to be agonizing for him.I cannot imply that I understand what God is up too in his life or why some survive and other's do not.Only God almighty keeps that counsel because his way's are "higher" than mine.So that is my disclaimer on this subject.God bless you all!!

  • 172. Re: Any AML Survivors please post here
    ncook Registered Users
    Currently Being Moderated

    C,

    Thanks for the kind words.  Have you ever been rubbed the wrong way by someone?  Have you ever had a bad day?  Well I was having a bad one and people can say things at a certain time that can be taken wrong especially when it's easy to misunderstand throught typing... and no 2010 will not be better and I hope it won't.. I feel like being negative for a reason right now:)  2010 will be the 1st year without my mother, and yes, I will smile and be happy, but hope your 2010 is better phrase didn't work for me the other day.  Of course I know I over reacted, but I am allowed to over react occasionally.  I hope you appreciate my honesty.  It gets old being MS. nice girl all the time   hugs , nicole (Barking loudly)

  • 173. Re: Any AML Survivors please post here
    trvlnfem Registered Users
    Currently Being Moderated

    Yeah, Nicole, we all have bad days and get rubbed the wrong way.  I am pleased anything I say can have asoothing impact on the reader.  I hate this typing stuff to communicate.  I think I certainly misinterpret and misspeak many time through the typing process.  And it is good to get angry at life, this disease and anything else we fell angry about.  i do not believe in stuffing our feelings.  I just did not want you to go away thinking we were not willing to listen and refrain from judging.  I have found good people trying to help ease the pains on these boards and wish that for you too.  ---PS I love honesty, continue in that vain Cecelia

  • 174. Re: Any AML Survivors please post here
    ncook Registered Users
    Currently Being Moderated

    Thanks C!  Hope you feel better soon and find something that can help with your pain!! hugs, nicole

  • 175. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    Double posting, please excuse

  • 176. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    gonebeyond wrote:

     

    Please.  I came to this site to communicate with others with Aml or have loved ones with aml.  Please just get off my case.

     

    Okay, let's be realistic here.  I'm going to try to make it very straight forward and simple.

     

    If you claim to not be here because you were encouraged to be in order to come take me on, I have to take that at face value.  At the same time, I feel compelled to point out you are still following the established pattern.

     

    First, there's accusing me of calling you names.  I don't believe I have.  Indeed, I took great pains to describe behavior of a group of people and believe my few addresses to you have been mostly generic.  Still, when you said I called you a liar, I have asked reepeatedly for anything you saw as me calling you a liar.  So far, you've offered nothing to support your accusation.  I now ask for an example of any name I have called you.

     

    Second, you've still only posted on this thread.  If your desire is to "communicate with others with Aml or have loved ones with aml," why haven't you been communicating on the AML forum?  There are other places on this site where AML is occasionally discussed. You haven't posted Word One on any of those posts...just this particular one.

     

    This is exactly what the antagonists have done in the past, zeroed in on one post.  Most people who wanted to "communicate with others with Am..." would have sought out other posts where people are hurting and have questions.  You have focused soley on this thread.

     

    Finally, you've resorted to the "I did not know I had to have your approval before becoming a participant  in this forum" argument.  Wow, that is almost verbatim with the antagonists.

     

    The only approval one needs to post here is the continued approval of the LLS.  That's it.  I have never, in any way, implied or said anyone needs my approval to post here.  Not only would that be egomaniacal it would be sadly delusional and sick on my part.  Those who know me would say one thing I'm deiniftely not is delusional.

     

    So, if you say you're not one of them, I don't know you.  I have to accept your word.  However, I'm reminded of the old saying, "If it walks like a duck and quacks like a duck, it must be a duck."

     

    Let's look at some of the other stuff you wrote to me:

     

    "You...just did not seem open minded at  all."

     

    When one has heard the same thing over and over and over and has decided it's bunk, why should one continue to keep an open mind until someone says something new?

     

    "As far as me making disparaging remarks about your faith or journey, I  think you got that one backwards.  Not sure why you can try to condemn  me for my faith but I can not ask about yours."

     

    I've got it backwards?  Let's look at your introductory comments to me:

         "  You seem to be skeptical of Jesus' role in our lives?"

         No, I'm quite solid in my understanding of that.  I'm skeptical of your belief of Jesus' role in our lives.

     

         "Are you a none believer?

         You acknowledge you already know I'm a minister, still you ask this question.  Are you calling me a hypocrite?

     

         "...you sound bitter?"

         Now, that's a judgement of my state of being.  And the majority of my response to you was explaining that I wasn't bitter at God but at people who bludgeon others with their "knowledge" of the way God works.

     

         "I want you to be happy with our maker's love for you."

         Another judgement of the state of my relationship with God.  The amazing thing is thatr you don't seem to be able to see any of this.  You're the innocent, I'm the bully.  I see it quite the other way.

     

         "Have you experienced any miracles in your life that you attributed to  God?"

         Not a bad question.  And I took great pains to answer it.  I even shared a part of my life I usually keep very private.  You can't ask me about my faith?  Upon what on earth do you base that statement?

     

         "I hope you find spiritual contentness."

         Another assumption casting doubt on my relationship.  Like it would be your business if you were right, anyway.

     

         "What religion is it that you preach?"

         Yet another attempt to cast doubt on my beliefs and credibility as a Christian and, especially, a Christian leader.

     

    Come on.  You've been trying to wear away at me since your first post to me.  And all I said to start this was, "When Jesus appeared, did you ask him why he chose to respond to your prayer when so many other people pray hard and wind up dying?  I've  always been curious about that."

     

    That's a simple question.  In fact, I was trying to dial back my intensity on the issue from previous posts.  I tried to answer your questions and assumptions.  I didn't attack your faith, but the things I've posted above were your response to me.

     

    Yet, you have continued to attack and cast aspersions on my faith and who I am as a person.  Wow.  And you don't understand why I'm mad at you?  Holy cow, pull the log out of your eye before you worry about my speck.

     

    "I will not allow you to run me off of this site. It can be a very valuable tool if we don't attack one another for  haveing different beleifs."

     

    Cool.  That was never my intent.  Though I still won't be surprised if you don't wander off on your own when you're done with this.

     

    Let me be clear, I don't care what you believe or what you tell people you believe.  This sentence -- "I know Jesus saved my life" -- is not a statement of belief.  It is an attempt to present belief as fact.  That's where you jumped the track.

     

    You never say you're a Christian, but since Jesus came to you, I'm assuming you think you are.  I have explained on a number of occasions in this thread and others that these types of "witnesses" work to hurt people who have lost loved ones (some of the folks you claim here to be with).  It makes them question God's goodness and purpose.  It turns them away from God.  Even worse, it does the same thing to those who it's become obvious God isn't going to save.

     

    Now, I don't believe God works in our lives that way.  Fine, honest difference of opinion and I'll discuss it in private until the cows come home.  But when it gets stated as fact here and I know from experience it turns people away from God, I stand up for those people.  I try to help keep their faith alive or, at least, viable.

     

    Jesus said it would be better for us to have a stone tied around our neck and be drowned than to turn a "little one" from coming to him.  Well, that's what your "witness" will do over time with enough exposure.  This hurts people, it damages people, but folks like you never seem to give one little damn about that.

     

    You have free speech.  You cannot scream "Fire!" in a crowded theatre.

     

    I hope you've made it this far.  I hope you can really focus in on these last few paragraphs.  I couldn't care less what you think or say about me.  But leave those who are hurting and screaming for some sign of God in their lives alone.

     

    Now, I'm done with you.

  • 177. Re: Any AML Survivors please post here
    LTaylor Registered Users
    Currently Being Moderated

    I thought this website is suppose to be for support & encouragement.  Not for bickering between one another.

     

    Tex <communityreply@lls.org> wrote:

    Larry Taylor,

     

    A new message was posted in the thread "Any AML Survivors please post here":

     

    http://community.lls.org/message/46437#46437

     

    Author  : Tex

    Email   : tex_silver@yahoo.com

    Profile : http://community.lls.org/people/Tex

     

    Message:

     

  • 178. Re: Any AML Survivors please post here
    ncook Registered Users
    Currently Being Moderated

    I do not think this is bickering rather people expressing their points of view.  I appvreciate that Tex has stood up for others like me.  I did find the other post pointing toward the idea that God saved him and not others are as blessed and chosen by Him.  I found the words in the text offensive,"we live and then we die".  This is true, however, coming from someone who I have never seen posting felt like a slap in the face.  However, I do realize due to my sensitivity on the subject of God and Death after losing my mother less than 6 months ago that I could have misinterpreted the meaning in this little paragraph.  Atleast it is the Life After Cancer forum and not the BMT or AML for example.  It is a reminder that people must be sensitive when coming here and refering to God.  I know if God was able to save my mother he would of, because like so many she was worth saving and had a lot to offer the world and of course I do not believe God would want my family to have the pain and grief we have experienced.  This is my personal belief!  hugs, nicole

  • 179. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    LTaylor wrote:

     

    I thought this website is suppose to be for support & encouragement.  Not for bickering between one another.

     

    Well, you've only been here a short time.  Over a while you'll get to know the full nature of the beast.

     

    This is a community and, as such, we have more than one focus.  However, we try to keep things in a bit of order.  First, as Nicole noted, there are disease and treatment related forums.  I can't think of there ever being a flare-up in one of them.  Those are very focused on disease and support.  Then there's the Open Forum (Let's Talk) where anything and everything is fair game.

     

    This forum is mostly just support as people try to cope with life after cancer.  What do we do with the emotions and realities of the "new normal."  This particular thread has been a little off kilter.  It began with a dear woman from England whose mother was struggling with AML  In her opening post, she asked for people to let her know they'd survived.  That's pretty much all she asked...have you survived AML?

     

    As the thread progressed, some people began adding stuff.  Finally, out of character for this forum, some people decided it was okay to not simply say, "I survived," as the original poster requested.  They began to make their "Christian witness."

     

    Generally, these discussions are held on the "Let's Talk" forum, but here's where these folks decided to push thier faith without regard to the damage they might be doing to others.  Now, if you've read my posts regarding that damage, knowing what I do, are you suggesting I should keep quiet and let these folks do that damage unchallenged?

     

    I don't.  I can't.

     

    If anyone wants a place where it's only about support and encouragement, then here's what they need to do.  Contact the administrators on this board and get them to develop a mission statement stating that's the SOLE purpose for these boards.  Then the admins need to enforce this mission brutally.

     

    Otherwise, we need to accept that we're all people here, thrown together in a tight and stress filled space and that we're going to squabble.  I don't see anything suggesting we need to check our human nature at the door.  Indeed, it's that very same human nature that makes us need support.

     

    Blessings

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