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Post by Hope on Jul 31, 2005 23:03:34 GMT -5
Ok, so why can’t family members get a grip on my disease? Apparently my Son let my Aunt know that her grandchild has the fibers all over his room. He can spot them better than me most of the time so you know he knows. They brought this up to me this evening and we all had a family discussion on Morgellons. It seems like they are curious, but are far from ready to learning any thing about Morgellons. They just can’t handle it. I offered to help them learn how to identify it and strongly suggested that they have their kids checked out. Even offered to show them my video footage as a visual aid , but they wanted no part of that. So, at this point my cousin is having a hard time keeping a strait face ;D . Apparently she finds this amusing or something. Her expressed philosophy about this whole situation was that since she felt healthy there was no reason to know about any of this. She is a LPN and my aunt is a RN, and they have no desire to learn about this!!! These people just expect me to live life as if I don’t have this. As if, right? I was advised by several people during this discussion to not dwell on it and assured that it can’t be anything to worry about. I let them have it at this point and told them, “I can’t pull fibers out of our skin and act like nothing it wrong when it is an infectious disease with a name!!!” I let them know that, “I am incapable of pretending like we don’t have this disease every time I pull even one of these fibers out!" They didn’t say a whole lot after that and suddenly my cousin wasn’t so amused anymore either. ;D I ended the discussion by expressing that if they ever have a need to know how to identify it or anything else, to remember this discussion and I will help them. I then told them to, “pray hard that that day ever comes.” You could have cut the air with a knife. Then I left the room. Peace, Hope
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Post by SpecueLatin on Aug 1, 2005 1:06:54 GMT -5
Hello Hope, I bet you are the one artist in your family. I had to explain this difference in orientation to a family member of my own recently. Some people, including psychologists, suggest that you can kind of tune-out the things that bother you... So you don't burn out. Now I think I react differently than the regular population. If I try to tune something out, I DON'T feel less stressed, I feel numb, I feel dull, I get a backache... because I stuffed my passionate feelings down and I have to use energy to contain those feelings down and out of the way. When someone suggests to just ignore something that matters, throwing that big wet blanket and buckets of cold water, they think they are doing a favor, it works for them, afterall. If I try to do this plan of theirs that makes them feel good, I feel like I am dying, "just drive the nails into the coffin, why don't you?" I think psychologists are wrong to suggest this is better for all persons. I also told this to a psychologist I went to at one time, and she thought that was very insightful. Artists just are not built to deal with things the way many people in the general population can and do. We still have to choose our battles though, and.. No way Hope, can you just "not dwell on it", you dwell, and then stir to action.. I think the passionate artist feels things at a very deep level and must act once they have gathered their plan and their tools, I guess this disease picked on the wrong crew. It did help me to point out (again) that my temperment is different from others in the family. Their advise is "right for them, not right for me" I was reading your entries on the PETITiON thread for the first time today - You are a mover and a shaker, glow girl spec
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Post by Patti on Aug 1, 2005 9:21:54 GMT -5
I think the passionate artist feels things at a very deep level and must act once they have gathered their plan and their tools I think you've really hit on something here. I have been noticing for quite awhile the type of people this seems to affect......others may be infected but they don't seem to feel it, or realize it, or even want to know it's there. There is "something" about us that makes us different.....we're not about to let this go nor will we allow others to demean us any longer. You are right.......the correct group was picked to bring this disease to light, thank God. I believe this has been afflicting people far longer than anyone knows, but for whatever reason we have been chosen to suffer and help show it the light of day. I think for those of us with Lyme, that was one way of bringing this to everyone's attention more quickly, even though our Lyme is not the conventional Lyme. As for dealing with relatives and friends, I don't think they will ever truly know what we go through unless they are suffering themselves. I am not very skeptical or cynical by nature, yet if I was well and someone told me this was happening, I'm not sure how I would react. I think a lot of their response is out of fear, for you (their loved one) and for themselves.....as long as they feel okay, they don't want to think about it. They don't realize that one cannot forget about something that reminds you it's there day and night through physical and emotional symptoms. Only when this receives national/global attention....when they can read it in the newspapers, see it on TV, hear everyone around them talking about it....will they begin to understand more what we've been going through. They'll still never really know the depth of the suffering but it will be a good start.
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Post by jj on Aug 1, 2005 10:02:41 GMT -5
AGREE Spec & Patti! There is definately SOMETHING about the artistic, deep thinking type. I have been thinking along those lines for years. We tend to view the world around us like the "masterpiece" that it is; standing back and veiwing it from all the angles and possible perspectives before one pulls us in. For some reason our abilities make us more vulnerable to this and/or more verbal at the same time. Unfortunitly our inate passion and perspective is mistaken by most of the medical profession as merely an obsession. Still hangin, JJ
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Post by Ed on Aug 1, 2005 10:37:10 GMT -5
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Post by SpecueLatin on Aug 1, 2005 21:51:28 GMT -5
JJ, is that all they have called us?? I am beginning to find the medical communities' "mere mortal opinions" amusing...
8-)ED! Bet that jug is empty!
spec
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Post by susiebelle on Aug 2, 2005 4:07:56 GMT -5
I love psychology and I have been to several therapysts and read alot over the years. I see a common thread that runs through alot of us. There is a sensitivity to the feelings of others, and the abiltity to keep an open mind. We need to know the source of a problem, not just an answer, and have the stubborness to not give up. Also most of are capable of dealing with this disease and people's ignorance with a sense of humor which so many drs do not have. For some reason we feel there must be something wrong with us because we looks at things a little differently than most and labeled as having mental problems. A friend at work that has been through this always laughed and said that everyone else was crazy and not us. They let their narrow mindedness and the inability to realize how hurtful they are sometimes. I was always told that. I was always told that I was too sensitive and that my feelings were wrong, but as I grew older I realized that I wasn't overly sensitive they were just insensitive. My husband tells me not to cry, not to yell, and not to get mad. He rarely shows emotions but as he gets older he is so negative and angry at the world. I think I'll just stay crazy and express my emotions whenever it seems appropriate.
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Post by southcity on Aug 2, 2005 4:24:25 GMT -5
Hello Hope. Ive had this problem too so I feel for you. Mine actually laughed out loud and in my face. teed me off and hurt my feelings pretty bad so I had an Idea to help others such as yourself and Me in the longrun with the goal of gettting some real research and interest started. You can help by going to www.nondelusional.com and fill out a survey and email me your video and pictures. I will post them with all the others from people just like us. show the site to anyone who disbelieves you. If all people like you and myself would only submit their stories in one place for all to see minds would change must faster than they are right now. www.nondelusional.com and check out the submissions page I suffer from this too and this is the only way I have been able to convince my family and with enough submittals we will not only open all others to this illness but also be able to map locations where its affecting people and some real research can begin by the way my family no longer thinks this is very funny. and do not doubt me one bit
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Post by TonyM on Aug 3, 2005 14:16:47 GMT -5
Susiebelle, I agree with you 100%!!! My parents always used to say that, especially my Father, even to this day, he blames my Mom for "making me so sensitive to things all the time". I told him, "you know, it'd be funny if WE were the ones to actually find a cure, and Not any Publically known Scientist!!"...I'd laugh my ars off - rolling on the floor if it all turned out that way!!!!
SouthCity, Ya noticed that I show where i'm from on the board here, it's on purpose!! :-) And I agree with the mapping thing, I actually have thought of that like 2-3 days ago while reading others' posting's, meanwhile trying to find out where the Real hot spots for this are.
Hope, Hope, my dear, CONGRAT's on the Family Meeting. I'm proud of you for forcing em to listen, because, if they are in your home, for a while even, there's pretty good chance they might catch it. I tried to tell my Sig. other that I had "something" for almost 4 years now, but to no avail, and now he has it. Today he is going to his Doc for the fact the we are getting sickly from the slime, now that the last 2 days have been really bad slime days, he almost choked yesterday from it, and I think it's what gave him pnemonia 1 1/2 years ago too!!!! I asked him to ask for a skin scraping, and his response was "I am not going to keep bothering them about stuff, i'll see what happens, i'll try to ask,ok!" I found in my time that the smarter or more creative you are as a whole person,, it's not likely you'll have too many followers' in life, sorta speak, if ya get what I mean. I have a pretty good intelligence level, heck, I can build Networks/Computers...and have 3 years in electronics from High School - of which, at the high school stage of my life, I had 2 Majors, and the 2 years of school had 2 part-time jobs as well. Now, I'm an MCP=Microsoft Certified Professional & A+ Certified, did it all in 7 months AND while having this too!!! I hate it when you know yer smart, and the rest of the world just down-plays anything you have to say when it comes to something They can't even explain!!!! I told a guy I know about this disease we have, and he looked at me with a light glaze over his eyes, like I was crazy AnD boring the heck out of him, hahaha, I told him to listen, because he's a bum that lives behind the complex I live in, and his also homeless wife, has epillepsy, or something close to it.
Sooo, rite now, my other half keeps telling me to get a job so we can move, I'm like, "I'm not going Anywhere!!!"...I got quite angry for the fact that still tries to deny the fact He even has this disease (he's the one that told me about the fibres coming out of his skin - a year or so ago), and the sorry idea that he thinks this will just go away simply by moving. Well, I hate to tell people that ARE ignorant to the fact that moving will do nothing for you, I tried already - well we tried.
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JLR
Junior Member
Posts: 61
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Post by JLR on Aug 3, 2005 14:38:57 GMT -5
Just keep keeping on! No one knows your body better than yourself, so listen to it. Just make sure you brain doesnt make you a slave to itself and dwell on it.
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Post by tinker on Aug 7, 2005 8:28:49 GMT -5
OK Man! All I have to say is WHY ARE PEOPLE SO STUPID! I mean why would we make up this kind of thing? My family believes me so much that they won't even call on the phone(with the chance that they will get it) HA-HA! and my husbands side just plain don't believe.(Ijeeits!) they come around me as if they could never get it. I mean I love them, but just because they talked to one Dermo- Doctor and they said I am delusional doesn't mean that I don't have it! FAMILY cant live with them ,cant live with them!~ <3 Mary
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Post by Spec on Aug 7, 2005 14:45:13 GMT -5
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Post by Ed on Aug 7, 2005 17:07:19 GMT -5
ah...........and you can pick your nose. Ed
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Post by Spec on Aug 7, 2005 17:40:38 GMT -5
among other things.
spec
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Post by Orion*** on Aug 7, 2005 17:51:29 GMT -5
Every body in this world is crazy except thee and me and sometimes I wonder about thee. >/ If you are not bothered by it then why worry about it... >/ I found it in my mother inlaws bed room and on her chair--the daughters told me mot to say any thing as she would go nuts aand freak out. OKeee.
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Post by uptownjean on Aug 9, 2005 11:12:47 GMT -5
Hello Hope. Ive had this problem too so I feel for you. Mine actually laughed out loud and in my face. peeed me off and hurt my feelings pretty bad so I had an Idea to help others such as yourself and Me in the longrun with the goal of gettting some real research and interest started. You can help by going to www.nondelusional.com and fill out a survey and email me your video and pictures. I will post them with all the others from people just like us. show the site to anyone who disbelieves you. If all people like you and myself would only submit their stories in one place for all to see minds would change must faster than they are right now. www.nondelusional.com and check out the submissions page I suffer from this too and this is the only way I have been able to convince my family and with enough submittals we will not only open all others to this illness but also be able to map locations where its affecting people and some real research can begin by the way my family no longer thinks this is very funny. and do not doubt me one bit
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Post by uptownjean on Aug 9, 2005 11:17:27 GMT -5
HOORAY FOR SOUTHCITY
AT LAST ONE PLACE TO COMPARE VISUALLY
i'M GETTING MY FUNKY JUNK TOGETHER
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Post by uptownjean on Aug 9, 2005 11:22:40 GMT -5
;D ;D ;D HOORAY FOR SOUTHCITY At last a place to compare visually!! I'm getting my FUNKY JUNK together right now. May need instructions Thanks God Bless
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Post by TonyM on Aug 9, 2005 12:37:27 GMT -5
Man, I knew something wasn't rite!!!! Yesterday/last night, I went to see Dukes of Hazard movie - Loved It!!!!!! Anyone needing laughs, go see it, it's hilarious!!!!
On to my Real reason for Posting this - Before going to the movies, my other half n' I went to a Homoepathy store. Got me some Aloe Vera Gel, Peppermint Tea, and Peppermint Essential oil drops. The whole thing ran about $19. I Can say that the Aloe Gel is Great!!! I am drinking it (per dosage instructions) along with the drops(per dosage instructions) And even the tea mixed in all in one 16oz cup. Yesterday I had 2 cups of this, and the results were strange, as the little critters started going all over the place. Then, after I took some of the Gel directly from the bottle and put it all over my arms and face and a small dab in the ears/on/around neck and scalp...they REALLY freaked out!!! It was as if they didn't know what to do, YAY!!!
Ok, I'll keep adding updates, not sure about daily, but I will, I promise to. Still seeking ingrediants for a recipe that was posted here by JPR and someone else, of whome I'm still looking for the name. I think it's dbird. Okay, til next time, Best Wishes to All!!!!!
-TonyM (tonym30_03@lycos.com)
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Post by itchingntexas on Aug 11, 2005 0:25:29 GMT -5
Hope, I just wanted to say that I am very sorry. I do understand. My extended family is one of those where they would never say it to your face, but behind my back, they would say, "You know I love Heather, but do you think she is crazy??" .... Yes, they would.
I hope I don't offend anyone, but I am pretty down on psychology, in general, although I know there are a few exceptions to anything. From what I have seen in the world today, 'they' want everyone to think about themsleves all the time. Self magazine, Self Matters--I do like Dr. Phil, BUT..., All about You...and the list goes on... I have never been to a regular psychologist and been asked, "So, how do you treat others??" I mean, everyone loves themselves, if you think about. I kind of think suicide is actually the ultimate self-love. You come to care more about your pain than the pain it would inflict upon others... I know it's a very different viewpoint than most...
But anyway, just a thought: What if instead of always thinking about 'having a 'me' day', or searching within 'me'...I look into someone's eyes for the first time in months? I try to actually put myself in another's shoes? I try a different perspective? I would like to take a few of those psychologists and spank them! (No, not like that...) After all, if you are doing for others, aren't you simultaneously becoming a better person?
Anyway, here I am again, the original 'queen of the pigtrail'... I digress.
Hope, I feel you. That's all I can say. Well that, and another thing I am fond of saying. I say there are two kinds of people in this world: Those who care and want to know, and those who don't care and don't want to know. You can take that to the bank. Sounds like you are unfortunately dealing with some of the latter... I'm praying for you. Thank God for the saltiness in you. You need it, dealing with people like that. --Luvs.
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