sondra
Full Member
infected since october 1999
Posts: 230
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Post by sondra on Jul 12, 2005 4:41:54 GMT -5
The medications I am taking are making me very grumpy right now. That may be why I am feeling this way..but.. personally I think that this board has become dominated by overbearing personalities who appear so wrapped up in themselves that the smaller voices have no place here...It seems that if you are not "all that" or a comedian,a psuedo scientists, have a long list of expensive herb and other protocals,and write lengthly dissertations on cow pods, You will never get a reply or any support.. I thought this was a place for people to ask for support no matter how Big or small the need may be..I think I was wrong....it would be nice to see some compassion for the rest of us out here suffering who are mere mortals...Sondra
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Post by SpecueLatin on Jul 12, 2005 5:25:59 GMT -5
Hi Sondra,
Don't feel left out, and please stick around! Someone posted to me when I made a first post or two here back in like February or March, not to be bothered by posts that get "no response", they said it just means that no one relates to the topic or comment you said. I always remember that. Sometimes 30 people read a post and not one comment.
I think a lot of people here have known each other for several years from a previous board, where they were participating regularly and so it is like a habit for them to chatter back and forth. Some have some sort of mutual chemistry.
Some probably have an agenda. Oh well.
I don't know if this will help? but I Hope you feel better soon.
spec
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Post by adapted on Jul 12, 2005 6:13:56 GMT -5
I'm so sorry, Sondra. My heart bleeds for people, and it always has. After coming here in mid February, there was a long period of time that I was on this message board day & night, specifically trying to reach out and respond to threads that were being read plenty of times, yet nobody was posting any replies to them. This message board has grown so rapidly in such a short period of time. Not many were interested in hearing my simple advice, which is, learning how the body heals itself. I used to list what I did to save my life three years ago, and how it got me well in approximately 2 weeks. I tried to be as respectful as I could be along the way, at least, whenever I gave any advice. I know for certain that we're all different, but the basics of studying disease processes and human anatomy can honestly provide great benefits to everyone, regardless. I understand though, because the disease makes sure that its victims keep the focus on it. It doesn't want anyone to beat it. We all have our own journey through this life and people will do what they feel they have to do. Since I can't help anyone, I feel like posting anything I can come up with, when I'm feeling up to it, to try getting anyone's mind off of how sick they are. That's pretty much what this bleeding heart's agenda developed into here. It's met with a lot of scorn from people sometimes, though, but that's all it is. We're all different. Some sick people appreciate any type of diversion, regardless, as long as they don't have to think about how sick they are for that small period of time. Yet, there are others that are caught in the vicious snare of the disease, and they fail to be able to see that we are truly all in this together. I pray for you, as I do for everyone, for your health to be restored. I hope that you'll be feeling better soon. God bless you.
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Post by agree with Sondra on Jul 12, 2005 14:52:14 GMT -5
For what it is worth, I agree with Sondra.
This board, sadly, has become only a voice for the "in crowd".
Almost everything else is either ignored, scorned, or outright criticized. There are exceptions, but not many.
A lot of this "in crowd" also thinks they are above reproach. If someone speaks up, they are beat up for doing so. I actually saw one of the moderators of this board tell someone, "some people just bring it on themselves" during one of these exchanges. Very sad.
Just one person's opinion. But it's enough that a lot of people don't want to post at all, or post very sparingly.
I know if I have a real "need" or "issue" I don't post it here anymore.
Again, very sad.
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linda
New Member
Posts: 0
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Post by linda on Jul 12, 2005 15:07:41 GMT -5
I never thought that people on a message board could feel marginalized. Wild. I'm sorry to hear that. I hope I did not contribute to that feeling, although, I've posted tons of links that nobody responded to. I just take it as a sign that nobody had a comment or didn't agree. I wonder who is in the "in" crowd according to their perceptions. I always thought I was just trying to understand this disease better so that I could help myself and my family. I am so scared you know. I just want real ligitimate help. Since I can't get it from doctors (unless I sell my children to pay for the bills) I have to learn all that my little mind can understand from others who are on this road. There are people on this board more familiar with medical issues than I am. Much of what they say goes over my head but I try to grasp what I can. I guess when the discussion on the board starts making me feel bad or scaring me more, I back off for a while. I always come back to see if there are any real new developments, but all the posts with exciting titles that look like a potential new development come from Jeff--I know what he has to say. I keep hoping some day I won't be disappointed. Perhaps my chances are better winning lotto. Who knows. In any case, I'm thinking I'll back off for a while again--let the "in" crowd take over, or whatever.
Hugs to you Sondra, Linda
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Post by ANTHILL on Jul 12, 2005 16:15:57 GMT -5
Hi Sondra I remember when this board was first conceived as you probably do" It was a nice place to be and with the advent of just a few that are disrespectful of others It has become a caterwaul board and I guess it partly my fault as a moderator because I didn't want to play the hard ass and delete some post that should not have been posted per board rules and that is not to talk about other board members negatively (PLAY NICE)
well that is changing right now Its going to be hard ass ant If any of you decided to put somebody on this board in a negative light don't waste your fancy flipper fingers Because it will be deleted and if it keeps up there will be a probability of an IP's being banned I am so tired of having this crap go on So if your one thats mad because your post got deleted just remember you are the one that broke the rules
I am going back through and deleting those post that should of been deleted yesteday right after I get done welding my truck
comedian---I have to feel a little guilt and I am shure that it is annoying to those that are so sick but this is the way I deal and I am hoping that that is taken into consideration
Sondra you are a vary valued member of this board and I always look forward to what you have to say although I may not always comment I am sorry if I let you down I hope you get feeling better---hug's ant
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Post by JLR on Jul 12, 2005 16:32:27 GMT -5
I'm on several graphic design forums and the posting protocol is usually to search for a topic you're about to post because it might have been addressed several times already. Not sure if this is the case, but whatever the reason you should not feel as if your being excluded. As someone pointed out, it just might be that no one can relate or have experience to the post. I mainly post to express what I'm going through with people who 'might' understand what I'm experiencing. It's hard to talk to the people around me (friends, family) when they think I'm delusional, so I don't anymore... now you people have to hear it... errrr, read it? lol
JLR
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Post by Lisa on Jul 12, 2005 17:04:38 GMT -5
I'm sorry Sondra, I don't mean to change the subject, but I wanted to comment on something Adapted said. I'm slowly and reluctantly starting to understand some things.
Adapted, if I remember correctly, it was a lifestyle change that led you to wellness. Is that what you would say? I can't go into detail and I'm not trying to be mysterious, but let's just say...my husband knows a lot about certain subjects. From the beginning he has said, if I want to rid myself of this I must change what I eat, get adequate sleep, exercise, spend minimal time in front of a t.v. or computer screen, and the most important....absolutely NO MEDICATIONS....none.
I've continued to think he was full of it, because how is that going to kill an organism that has taken over my body? Every time I pose this question, his argument/advice has always remained the same.
So, now I'm thinking about weaning myself from what I've become dependent on all of these years. Find a way to somehow force myself to go sleep at night. Find the strength to exercise. Unplug for a while. I eat healthy, except for sugar, so got rid that of my diet.
Adapted, since the old messages got lost, would you mind posting (or I could just email you), your list of things you did to get well?
Sondra, although I see where you are coming from, I think what you might be sensing is just different ways people cope with having this disease. Believe me....over the years I have posted many things that I thought were of importance and got minimal response.
Ant, we go way back (Anthill Bill) and I trust you with whatever decisions you make regarding posts.
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Post by Hope on Jul 13, 2005 0:51:00 GMT -5
Dear Sondra, Please don’t feel so inferior. Many people will reach out to you here if you ask and expect nothing in return. Have you asked? I haven’t read anything like that but maybe I missed it. Jeff’s posts are great for any Schwartz info but it’s Bugs Alive that has the scoop on EVERYTHING. I swear that Spec has a doctrine in Parasitology, Ant has charm and a wealth of info also, Patti and Kerry have been through the ringer and back with this disease and are loyal activists, Taratula knows her medicines like nobody’s business, and Adapted has the ability to heal your aching heart with her kindness and caring. I can’t mention everyone here but they all have their special traits and I love everybody’s personality here! Yes, there is much more to Morgellons than JEFF and Schwartz. It would be nice to see Bugs and Ant post some old stuff that got lost so if you are in need, ask. Some people here have good reason to doubt Schwartz along with the research to back up their beliefs. I sense a lot of frustration in your post and I am sorry that you feel this way, but I see nothing in your post that suggests you are asking for any support but rather venting some dissatisfactions. That is ok by me but judging and telling people that they have overbearing personalities could be interrupted as offensive to any number of people. Kerry and Patti have done a wonderful job with this board! They are more than fair with all of us and allow us space to speak freely and be ourselves without always having to sugar coat everything or walk on egg shells. Would you really want it any other way? Now if someone has attacked you personally that’s one thing but being upset over what others say to each other, in my opinion, is very fastidious. May I suggest that you start your own threads that have specific questions that you need answers to? You may want to put something like “EMERGENCY- PLEASE RESPOND” as a title and watch how quick we all come to your aid. Tell people you NEED a response and you will get one. Even the Morgies that often disagree with each other stick together when the chips are down. So, hang in there and speak up when you need some support, we are here for each other. Peace, Hope
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Post by justice on Jul 13, 2005 16:42:44 GMT -5
Dear Sondra, I am somewhat new to posting here, although I have been reading them for a while now. I understand your feelings regarding the "in crowd." I have felt that way regarding the longtime members of this website. But, as with any group, the comradery (sp?) felt amongst the original crew is hard to join. I don't think for a minute it is intentional to discourage new members, merely an unfortunate outcome. With this disease, my feelings of insecurity and being alone are heightened to unimaginable limits. I try and remember that. When I come here to read, I do so because I need to feel a part of something that my old existence (the one without this illness) used to provide. I could talk about this until I'm blue in the face and still feel I haven't relieved myself. My friends and family (as kind and understanding as they have been) tire quickly of my interest on the subject. This is the only place I can go (whether I post or just read) to feel like I'm not a complete freak, obsessed and alone. Please don't feel like an outsider. This is the place where you are completely welcome and always "in." I appreciate your honest opinion and believe you were socially brave to state them. As for everyone, I wish you a speedy recovery, if not some mere relief from our current symptoms. with much admiration, Justice
P.S. In reference to Hopes' husbands ongoing suggestion to lifestyle change as the answer. I know he's right. As with most people, I resist change. I love food- the good stuff along with the bad. I adore coffee. I am a smoker. The only thing I can't do any more is drink alcohol. I no longer have a taste for it. I'm not sure if its me or them. Regardless, I know I have to change in order to create an environment that is undesirable. I am stubborn to say the least, and the thought of giving up my endulgences that have become my basics really pisses me off. But that is the reality of my situation.
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Post by Chazman on Jul 13, 2005 20:42:16 GMT -5
This thread spoke right out to me. I ain't been around for awhile and I won't go into the details. But I do miss those days when it was fun and not all about controversy. It ain't the board... it's the people.
I hope I was never 'overbearing', Sondra. Though I confess to being a bit of a humorist, at times.
Hope's little spiel pretty well sums it up, Thank You, Hope.
Ant, my old friend, you DO what you have to do... and I know you'll always do the right thing.
Peace & Health to ALL of you,
-Chas
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