Please, "give peace a chance".....be yourself.

Discussion in 'Fibromyalgia Main Forum' started by Cactuslil, Aug 27, 2002.

  1. Cactuslil

    Cactuslil New Member

    I have read several posts and responses, including me, who have become afraid to let the armour down and be as you are for fear of criticism or being banned.

    We all should understand how bad some of our days and nights are and apply what understanding, patient and care we can bear to give at that time.

    I know I have been a jack-ass here before but I have been "pardoned"; there are stages of these syndromes of CFIDS/FMS/MPC et al. that cause us to behave sometimes irrationally or emotionally or whatever and that is a right given to us by our higher power. The power to be ourself.

    So please lets try to let this fear die down and be there for each other as we progress through this disease. This sept. I will have been here 3-years. I could not believe it; my "baby" is now ten and I have had this disease for 10 years is you look at the "first" symptom. It seems often as if it were yesterday....somehow this "condition" can lock you in time. Anyway,

    Let us agree to disagree in kind ways. There is no such thing as constructive criticism. I am degreed in the performing arts and and as such received MUCH constructive criticism. No matter what anyone says, a little part somewhere near the heart hurts. Criticism, even when deserved, hurts. We can, if the need comes up, try to help and put our criticisms as lovingly as we possibly can.

    So, please, lets be ourself. That adds color to this forum and gives it life. We are a tapestry, united by our conditions, to make a whole. To me, that is good. Love CactusLil'
  2. Cactuslil

    Cactuslil New Member

    I have read several posts and responses, including me, who have become afraid to let the armour down and be as you are for fear of criticism or being banned.

    We all should understand how bad some of our days and nights are and apply what understanding, patient and care we can bear to give at that time.

    I know I have been a jack-ass here before but I have been "pardoned"; there are stages of these syndromes of CFIDS/FMS/MPC et al. that cause us to behave sometimes irrationally or emotionally or whatever and that is a right given to us by our higher power. The power to be ourself.

    So please lets try to let this fear die down and be there for each other as we progress through this disease. This sept. I will have been here 3-years. I could not believe it; my "baby" is now ten and I have had this disease for 10 years is you look at the "first" symptom. It seems often as if it were yesterday....somehow this "condition" can lock you in time. Anyway,

    Let us agree to disagree in kind ways. There is no such thing as constructive criticism. I am degreed in the performing arts and and as such received MUCH constructive criticism. No matter what anyone says, a little part somewhere near the heart hurts. Criticism, even when deserved, hurts. We can, if the need comes up, try to help and put our criticisms as lovingly as we possibly can.

    So, please, lets be ourself. That adds color to this forum and gives it life. We are a tapestry, united by our conditions, to make a whole. To me, that is good. Love CactusLil'
  3. Cactuslil

    Cactuslil New Member

    I've missed some days at times and seems those days were the days when all heck was going on! I still don't know what happened; and giving all the benefit of the doubt, I hope what you said about a "click" of sorts, has given it up!

    What use is a forum for exchange of different ideas or augmenting treatments is there are no participants, new folks coming and learning and vice versa.

    If such a group exists I sincerely hope they will rethink their mission! Lil'
  4. Cactuslil

    Cactuslil New Member

    You are so correct. We surely don't need to debate this in this vein further! Sorry.

    My email is PaperbackWriter_101@msn.com. Ll'
  5. Allen2

    Allen2 New Member

    that there is a small group of people who want to pull off a coupe detat on this board? I'm not making fun of you, but I mostly keep running into some neat, encouraging folks and newbies that make my time here very worthwhile. Al
  6. LBinCA

    LBinCA New Member

    Oh the beauty of your Words! How refreshing and peaceful...to be yourself is a challenge in life...most are, sadly, never able to accomplish. I decided to be "Myself" several years ago...after a life-altering experience. We waste so much time arguing, bickering, pretending...and NEVER being truthful to OURSELVES.

    I think acceptance and to be content within our own skin allows to face the challenges that Life hands us. Each experience with be dealt with one of two things....grace or frustration...we make those decisions based upon where we have been.........

    Your statement above:
    So, please, lets be ourself. That adds color to this forum and gives it life. We are a tapestry, united by our conditions, to make a whole. To me, that is good. Love CactusLil'

    Lil...Thank you for allowing the "Good" to come forth and letting the long-standing members as well our dear Newbies the opportunity to see ....we are decent folks...all under one umbrella...I choose compassion, love, respect, and acceptance.

    God Bless and keep everyone Pain-Free and Peaceful today...............LoriB
  7. kitkat623

    kitkat623 New Member

    Your kind thoughts do you credit. You are always among the first to encourage others, and I've always enjoyed your posts.[I read for a long time before I finally posted.] I think that you're right. Folks in pain for long stretches of time can sometimes choose to take it out on the world, but we are blessed to have so many people on this board who are loving and caring. That's what gave me the courage to start posting. Be well, Kathy
  8. Cactuslil

    Cactuslil New Member

    Merci' I can hardly breathe. My daughter played the Dixie Chicks new release and when it comes to little boys and goodbye-s, the key to my heart is wide open! And my sweet little boy is having a wild blast I am sure with his eclectic original father who is still a good friend and quite the "hoot". William took off with his guitar to play with his father; their cutting a CD. I wish I could play it for you. A true treasure.
    *
    Now, back to the board. No, Allen I don't believe there is anything going on but misunderstanding, hurt feelings et cetera. I am still against moderators; I have been here two years with NO moderator (there was one behind the scenes but I did not know it until I had something vanish off the board). Once the moderator business started here hasta-la-cucaracha! I try to stay the "H" away from anyone taking away my free agency....on days when there is "combat" I either research, write or whatever but rarely will I anymore "get into it".
    *
    I love a good debate but until we get such a forum where we can go "there" I don't think it helps others and that is what a lot of this forum is about. I was scared to smitherings when I found this forum and I'm not too good tonight. That music can rip me a new one! And at that, have a good night. Love to all, CactusLil'
  9. glow

    glow New Member

    I think what you wrote is lovely. I hope that all of us can take that to heart and make an effort not to respond automatically, without thinking, when a post hits us the wrong way. Wait a while and reread and see if it sounds differently to you the next time. If it doesn't, then try to give the poster the benefit of the doubt. Maybe that person was having a really bad day, we all do. It seems like some folks just don't want to be nice anymore.

    We don't have to agree on everything. We dont' have to agree on anything. All we need to do is to respect the fact that on a board this large there are going to be people with vastly different beliefs. We all have the right to our opinions and values without being preached at or reprimanded or made fun of.....

    Myself, I will try to be nicer. I have come here on some days when I have been in a very foul mood and would have done better to stay off the puter. I will make every effort not to submit my fellow members to my rantings and ravings.

    To coin a phrase....can't we all just get along?

    goldie
  10. Lynda B.

    Lynda B. New Member

    Been here a while my self. Took a vacation from this site because of the nastiness and found it was making my days pull me down and not lifting me up.

    There have been a few who use those "code words" and "code phrases" for a while...have subtly or openly degraded the same people and made fun where it is inappropriate. There are some silly rules in place from up on high too.

    We just need to learn what to respond to and what to ignore. The same basic lessons we teach/taught our children. Practicing what we preach. Understanding some have a harder time of it than others and go from there.

    This is a nice place to visit who I want, how I want and when. I don't live here and can turn off my computer any time I want if I am having a hard time with the "goings on".

    I wish only the best to those who are victims of any disorder/disease. The world out there is not always kind. I hope I can always get that here if not most of the time. Plus I love info and sharing.

    Take care all,

    Lynda B.

    [This Message was Edited on 08/28/2002]
  11. jackiec

    jackiec New Member

    Dear CactusLil',

    Your last paragraph really caught my eye. I think you have chosen the most appropriate word for how a good forum should be.....what a lovely tapestry we can weave together if given the chance. I feel a need to copy your paragraph that meant so much to me, so here it is for all to see again and again. I thank you!!!

    Lil's words: "So, please, lets be ourself. That adds color to this forum and gives it life. We are a tapestry, united by our conditions, to make a whole. To me, that is good. Love CactusLil' "

    Here's hoping we can all weave threads of kindness and friendship, encouragement and compassion, understanding and hope.

    J.C.
  12. kredca4

    kredca4 New Member

    You got the new Chicks CD huh? I can't wait till I can get my hands on it too, car's not running, maybe my Son will go to Best Buy and get me one. lol

    I guess the numbers of Old-timers is getting lower and lower, not to many of us left.

    I do agree with you, I liked the board better without member montators, we had James back then to keep us in order, trouble with growth is one person couldn't keep up so they had some of the Members do it.

    Oh well, just duck when everything hit's the fan is the Motto I plan on living by from now on.

    I have been doing a lot of research and reading to fill the time till we get back to whatever.

    I am always me, and that's why I survive, noone like's me, so I get invited to none of the clicks. ( ;o) )
    I just enjoy reading them when they are goofing around, but really get sad when I see the fights start.

    With these DD's tho Lil, it's hard to be yourself, I can't remember who I am sometimes, lol.

    You are different from when I first met you back in Nov of 2000, at first I thought who is this crazy person, well she was a Sister who was hurting and really going through it, and wrote about her feelings and her beliefs, and I have seen her Mellow and I have seen changes in her life that can only be attrubited to Her Strong will to survive also.

    That's why we are here, I hope, I know that's why I came her, looking for Understanding, Friends, and Knowledge. Found it all, and I hope that it'll always be that way.

    Even through the Tough TImes, we should support each other.

    If I haven't been there for other's, it's not because I haven't wanted to be, some times I just miss the mark.

    Hope you all stick around and be who you are, a person with a Health problem, but still a Person who matter's in this world.

    God Bless You All,
    kredca4/sharon
  13. Cactuslil

    Cactuslil New Member

    Kredka, you are so right about change. I came here a ranting, raving, person in great pain, both mental and physical and through the information and comfort offered by the members of this forum, I slowly got myself pieced together somewhat.

    As you said, we are still evolving, our conditions continue to change, and we are surely not "finished products"!

    Lynda...thanks. So great to hear from you...

    Our caregivers, family et al. can only take so much of our problems; sometimes they are so vast only another on a forum such as this could understand the good and the bad..especially the bad...you'd have to have quite an imagination to figure this sucker out!! Love CactusLil'
  14. homeskillet19

    homeskillet19 New Member

    Hello,
    I know you have not seen me around here for awhile, it has been months.
    I have missed Y'all but I just couldnt take the negativity anymore, I told a good friend on this board it was because I was sick, well I am sick but that is not the reason.
    I debated with myself if I should say anything or not and well I decided too, if not then I will get back on the board but still have the anger towards the things that went on and the reason I left, so here goes.....
    When I first came on I was sooooooo happy to see people that knew where I was, before then I had not met anybody who had these diseases Fibro/MPS and it was great I didnt feel all alone anymore, my family has been great but It just wasnt enough, when I would go through what we all do my family tried to understand but as hard as they tried it just wasnt the same as someone that was going through the same thing that I was, so when I found Y'all I was just thrilled, it made my day and the following months it really helped me....at the time I was just getting over a bad time of my life, the year before that I had a virus(they still do not know what it was) and I was not in the best of health at the time, my fibro/mps had progressed to the point I was just going through the motions, then I got sick, it didnt not respond to the medication they gave me and my muscles collapsed well after a year of doctors not listening, not caring , not believeing I ended up bedridden, it was hard I had two preciuos teenagers 18 and 16 year old and a wonderful husband that depended on me and at that time I couldnt feed myself, walk use my arms, I even had to wear a diaper, it was the worst time of my life, but with my families help alot of research and some alternative medicine I got to the point to where I was able to sit up,feed myself, use the bathroom in the toilet and walk around somewhat but then I was at a stall and then I found this board, with the compassion, the ideas, the knowledge of the members I finally got myself to the point today, that the only time I use my wheechair is when I will have to walk a long distance.
    I credit my progress with my family and my will and determination but I also credit Y'all that have been supportive of me, in the good and especially in the bad times!!!!
    Then it started to get to where people thought that to get someone motivated is to put them down, hey folks we get enough of the you are just being lazy, you are depressed, it is all in your head from enough folks in the medical community and our family and friends, that the last place I thought I would find it is here with people that are suffering just like I am, it hurt me deeply when someone wrote and said that the problem with us is that we are fat and if we would just get off our butt then we would get better, well it just shocked me when I read it, but it really devastated me when a moderator backed him up, it just sickened me, and when people wrote back and said how dare you, the moderator said that it hurts sometimes to hear the truth, I mean does anybody else see the damage in those statements, if it had been 4 months before that then it would of crushed me and it makes me think of how many people it actually did crush, I have heard a people say that they have found the cure and if we dont follow that then we are making ourselves sick, well I beg to differ, if you are at a point in your disease that you can say that, well GREAT, but not all can say that and I know that we get excited to help when we find something that works for us but hey it might not work for all and it is okay to share but to but to shame people into doing someting that might of been good for you, is not only dangerous but down right mean and I will not hold that back and make it pretty, it was mean and vicious and irresponsible of those that did it!
    then I got off and missed the ones that have been very supportive so I came back on and I stayed for two days, because that person wrote basically the same thing and when a bunch of sick, depressed, just dx people wrote that it was mean they got put in there place again by the same moderator, so then some said they will not come back on and the moderator that supposedly cared said then leave if you dont like it then leave, omg how dare they, these people came here for love and support and got told to go else where if they were not going to follow the drill sargeant mentality, well nobody told me that because I didnt dare state it, for the fear of someone telling me then go, I just couldnt take it at the time I was not in a good place mentally and physically, the go we dont want you would of devastated me, because as strong as I am at times I am very emotional just as most as these wonderful people are that seek love and support from this board!!!!
    well I know I have wrote a book and the reason why I decided to say my peace is because I want to get back on the board, I want to help people , get support, support others and well sometimes just have a laugh but like any human being, sometimes you just have to have a say!!!
    please know I want to be here with the wonderful people that helped me get out of the bed and the wheelchair(well sometimesLOL) in a loving supportive way!!!!
    I like you cactusLil' believe that we can do it in just that way, we are all in a bad place at times and some more then others, we are not all the same, we are in different stages of our disease, and we as ones that have suffered with it for awhile (12 years) then we should be more understanding then most!!!!
    I hope this does not get me booted off, but I just could not come back without having my say!!!!!
    Your friend,
    Denise
  15. thereseuk

    thereseuk New Member

    This was an eloquent thought provoking post. I hope you do stay because the more people like you the better the board will be.
    in support
    love therese
  16. griswoldgirl

    griswoldgirl New Member

    CactusLil'-I know what you mean. I have not been on because my life and my health are in the pits and I do not want another lecture about disability, what I do nto do and do do.

    I do the best I can and want to work and remain active and I do.

    Just got to get the heck out of the hospital I am in-that place is killing me and I FINALLY realize it. They are in humane to people and all they want is machines who do not ever get ill and show up on time everyday even when there kids are in the hospital. I a, in a position right now that my child was sick at school and I am outr of warnings-if I left I would have been fired so my poor kid had to lay in the office until the bus came to take her home-everyone of my backups were not to be reached and my boss would not let me go because if I have any part of an absence before nov 27th I am fired-just like that after 3 years of service.

    Life stinks sometimes and living with this DD and handling life is not easy at all and sometimes we just need to vent. i have a couple of supportive people-I have lost my biggest one-my hubby-through our separation and sometimes you guys are IT~the only ones who get it.

    Take care and I hope you are doing ok

    cathy
  17. homeskillet19

    homeskillet19 New Member

    Dear CactusLil,
    I have to say that I am sorry I used your post to get this out and I also want to say thank for writing it so I could, I know it sounds like I am talking from both sides of my mouth, but please let me explain, I wanted to say these things but I was afraid to do so and in you writing this lovely letter gave me the courage to do so, it has helped me so much, I did not just babble off from anger this was a very thought out letter and if any of Y'all that know me, that is not my style, I did not mean to anger anybody and put out blame under your thread, Girl you just inspired me too be myself and for that I am grateful, I wish I would of had the courage to do it on my own, but I didnt and for that I am sorry,but just like this board was and I want it to be...I did it with the love and support of a friend.........Thank You!!!!!!!!!!

    Dear therese,
    thank you for your words, it has meant so much to me!!!!
    I was very nervous and frankly, scared to do so...But your words have touched me and have gave me the encouragement to stay on this board and to fight for what is what I think the message for this board is, it is to help, love, support all of the wonderful people on this board!!
    It is funny how so few words can make such a impact on us, and I Thank You!!!!!
    Your friend,
    Denise
  18. TracyV

    TracyV New Member

    I'm glad your back, and your post was well put. I agree with you and hope this place can become a loving supportive place.
    Hugs,
    Tracy
  19. herblady

    herblady New Member

    i hope being myself is enough. so much trouble lately. cindi
  20. majic

    majic New Member

    thanks cactus lil for putting this on the board.


    soulwriter i agree with you 100% on everything that you said.

    thank you both
    majic