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Post by bannanny on Feb 14, 2006 1:03:34 GMT -5
I haven't been posting for awhile for the simple fact that every thread seems to have nothing but accusations and a whole lot of nonsense. There are still those threads that are informative and those who have interesting theories, but I myself really miss the simple communication between people who just need to vent and those who need to compare their symptoms. It can give one the validation you desperately need with this disease. It doesn't help (me at least) to read about all the sparring that seems to go on here, and who cares about who's who. If someone wants to research.....let 'em research. If something is gained from it....great... and if not, then let it be the end of it. This used to be a calming, tranquil place for me to escape the lonliness of this crap. I really do miss the communication with the friends I have found here. It seems so off track anymore. I'm certainly not attacking any one person, but it's hard to come here anymore and know that you can still "feel" that bond that helps so much. I miss that a great deal. Maybe we should have a "Research" thread all to itself. There's so much reading to do now with all the researching, that you just don't know where to go to get that kind of healing of the soul you used to be able to find here, even if just for the night. Is it just me, or does anybody feel the same? I luv all of you ~~~ bannanny
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Post by flutterby on Feb 14, 2006 1:22:54 GMT -5
Dear bannanny, I don't take the bantering seriously. I think a lot of people are frustrated and still have no definitive answers. Lots of theories, lots of causes, tons of research and frazzled minds.
I read the posts that will give me information or updates. Remember, bannanny, hold on tight, "I'm still holding your hand." Don't let go just yet. Hang in there. God Bless, flutterby
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Post by stupid smurf on Feb 14, 2006 2:08:47 GMT -5
I haven't been posting for awhile for the simple fact that every thread seems to have nothing but accusations and a whole lot of nonsense. There are still those threads that are informative and those who have interesting theories, but I myself really miss the simple communication between people who just need to vent and those who need to compare their symptoms. It can give one the validation you desperately need with this disease. It doesn't help (me at least) to read about all the sparring that seems to go on here, and who cares about who's who. If someone wants to research.....let 'em research. If something is gained from it....great... and if not, then let it be the end of it. This used to be a calming, tranquil place for me to escape the lonliness of this crap. I really do miss the communication with the friends I have found here. It seems so off track anymore. I'm certainly not attacking any one person, but it's hard to come here anymore and know that you can still "feel" that bond that helps so much. I miss that a great deal. Maybe we should have a "Research" thread all to itself. There's so much reading to do now with all the researching, that you just don't know where to go to get that kind of healing of the soul you used to be able to find here, even if just for the night. Is it just me, or does anybody feel the same? I luv all of you ~~~ bannanny Ditto. I commented on some of this, just yesterday on the other board. I think this is a good board, and I appreciate the opportunity to participate, and the EFFORT it takes from the admin, and mods, to keep it going. But I don't feel the "support" side as much. Sometimes you just need to blow off steam, or horse around. Sometimes you need to just stamp your feet, and get some attention.
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Post by Orion*** on Feb 14, 2006 2:46:45 GMT -5
I'm not much better off or any more educated than I was when I first came here in April of last year--lets see , thats 10 months ago... I still have the black (worms--fibers--etc) what ever they are nor do I know why or where they came from nor do I know what kills them.. >>>Even more perplexing are the phony -pseudo--parasitic black hairs that are growing all over me...I don't understand them at all. I am working on my own protocal that does seem to be helping but nothing seems certain.. >>>Yes this board has undergone an evolution--wether good or bad...but then nothing is static, all things change over time....It has become hard to sift through all of the irrevelancy trying to get to the main meal...It is juvinile to make this a sounding board for personal conflicts...who cares--just meat and potatoes folks.. If Tim Tam Flim Flam wants to come here and post his-her-knowledge then please do but I got more to do than solve riddles...Spit it out or leave me alone.
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Post by guest on Feb 14, 2006 9:20:32 GMT -5
I have seen a few posts that shouldn't have been on here but as a whole, I still see nothing but good people working together to solve their problems. Believe me, there are worse forums around. Sometimes sick people just don't think before posting but that doesn't make us all bad. I think we all are exhausted, irritated, and frustrated at trying so hard to find the answers. Everyone needs to stop and think before they put something questionable on here for all the world to see but aside from that, this is the best place to be and everyone here has their own worth.
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Post by curry on Feb 14, 2006 14:54:40 GMT -5
Bannanny, I agree with you...and guest...and others. I feel I may be a contributor to your whoa's but I have only it he purest of intentions. I get p@ssed off, vent, over react but to hear the cries from myself sound so much like my people...only pushes me harder. I feel a research only board would in a way be beneficial in some respects but I have learned so much about this disease just by reading everyday post's and listening to everyday people dealing with this disease. I think for myself and my research if I removed that from the equation...my research would suffer tremendously. Please consider that when and if you ever run across anything I've said and may feel I am an ss. I'm not feeling any personal punches but I do realize a lot of people have a hard time receiving me. I am sorry for that but hope you all realize I am fighting in the same battle, perhaps just a different position on the battle field.
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Post by Frisk on Feb 14, 2006 19:53:59 GMT -5
Bananny I am alot like you Bananny. I dont have the time or energy to read all the posts anymore so I just read the ones that interest me. Thats what I do and I still think its a great board. You can make it whatever you want it to be really :-*Frisk
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Post by slinker on Feb 14, 2006 23:05:14 GMT -5
I used to post more. I think we all fall victim to frustration from having this malady and not being able to get rid of it. It's natural to want to research and find out what's wrong with yourself, and can be frustrating when you think your theory is going somewhere true and no one will listen. WHatever this infestation is caused by, one of its most extreme byproducts is the stress of enduring these attacks on our physical bodies. And the worst feeling of all is to go a few months symptom-free only to get infested again.
It just happened to me. I hadn't had any symptoms since before Thanksgiving, and this weekend, they came back and now I have the fibers in my nose, pustules on my shoulders and arms, itching, white pellets in my hair. I want to rage, and in that mood, it doesn't take much for someone to set me off. I think we all are that way to some degree. Human nature ican be adversely affected by stress and ill health. It's also human nature to take it out on each other. It's our lot to try and rise above our moods and not let someone else control our emotions.
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Post by B Ross aka Betsy on Feb 15, 2006 1:22:51 GMT -5
Slinker, I'm so sorry to hear you had a relaps. That must feel pretty awful. Hope you improve soon. I have had a similar experience (in a smaller way). It has made me feel very unsure about claiming any victory or progress because I never know if I am on solid ground. That in itself is unnatural.
I agree with many comments above. I'm glad we have the board. I appreciate the variety of people and diverse ideas. I also like the way we can work together. I like it when posters are kind to each other. I respect the effort of those who enjoy research. I am drawn to the posts of human interest--just people and how they are coping. I like to hear of any doctors who are helping and what protocol patients are following. I am energized by progressive efforts to clarify and get recognition for this condition. Most of all, like most of you, I desire the answer to" What is going on with my body? " What cure will make me whole and able to enjoy the simple pleasures of like again.
I am grateful for this board. It keeps us from being issolated and feeling like we are struggling alone. I thank Mary for starting it and those who administer and maintain it. Betsy
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Post by bannanny on Feb 15, 2006 2:03:32 GMT -5
Ya know what guys........I love every one of you for your time and honesty and most important, your kindness. Shoot, I sure don't want anyone to think I'm stompin on them....I'm not, and I agree this is a great board. I guess it all boils down to the fact that I'm really havin a hard time with this. There's nothing that's working for me. I'm gonna have to put my last (of three) dogs down. He just looks at me and cries and it kills me. It's to a point here that nothing I have can be saved, not even anything new. I really don't want to keep going but I know I have to...maybe that's why I miss the way this board used to be. I'm scared that I'm gonna give up. I pray and I pray and I pray some more. I'm a survivor so I don't understand why my mind seems like it's given up and become a bowl of mooshy mashed potatoes. I feel like a big baby and I can't stand that either!! I also can't stand that I'm starting these kinds of threads.........like you guys feel any better than I do. I think it's gone to my brain. I don't feel anyone here is a "bad" person, and I know you are all frustrated and exhausted and no one has pis**ed me off. And Slinker, I feel so very bad for you. Do you wonder if there will ever be an answer? Your words are wise. I need to apply them to myself. I need to rise above this mood of mine. Maybe I was just asking for a little help. I tend to go about that in a round about way. Thanks guys.....you have helped.....I needed a reality check. Luv ya's ~~~ big baby bannanny
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Post by JJunplugged on Feb 15, 2006 10:50:41 GMT -5
Bannanny,
I have always ment to tell you how much I enjoy your screen name and wondered? I do enjoy the more personal reflective posts and turn to those especially when needing a little uplifting. We come to know who to turn to for warmth and a squeeze of the hand. Your posts fitting in that category (as well as others). Thankyou. .... Having this condition changes us and how we view life and continue living it. It is heart wrenching to see how much it has changed some of us in so many ways. Keep being you. .... Still hangin, JJ
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Post by guest on Feb 15, 2006 10:58:34 GMT -5
same as what?
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Post by friskers on Feb 15, 2006 14:37:21 GMT -5
Banany Im so sorry for you and your dogs. Losing just one is hard enough. I think you may be going through the greiving proccess and thats why you feel so "mushy". Just let yourself cry as much as you need to. Ive lost many dogs in my life and they become like your children so its only natural that you feel so bad when you loose them. And to loose so many in a short period its no wonder you feel as you do. Just keep posting her and you will find comfort and support here. Nothings really changed here. Theres just more posting to sort through. Love, :-*Frisk
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