|
Post by janedough on Aug 18, 2007 19:31:53 GMT -5
Ohh, Carrie, I can't imagine 13 (puberty) with morgellons as a capricorn. Everyday I am like which child is this coming down the stairs, good sweet loving helper or the other chaotic half? Your poor kids have been through hell, too. It is so not what I wanted for mine, but you have to deal. Forget dealing with your own symptoms, It's theirs that worries me most, (but when mine are bad, I just want to strangle someone because I cannot do a thing for them. I really can only treat myself other than baths for them with some salt and enzymes. Otherwise, Family services may come and take them away. MAKES ME WANT TO SCREAM (SORRY FOR THE CAPS, BELIKEWATER, WE ALL KNOW HOW YOU HATE THEM)!!!!!
|
|
|
Post by friskers on Aug 18, 2007 19:33:51 GMT -5
No need to apoligize Jane I see your having a very rough time and have alot of compassion for you. Im not a parent either and just seeing what it takes to raise one child and not have morgellons is hard enough!! But to have 3 and norgellons.....well its no wonder your angry and overwhelmed! I hope your 3 year old is ok now, what happened that you were in ER? God bless you and your children and hope things get easier for you
|
|
|
Post by liz on Aug 18, 2007 19:46:49 GMT -5
I hear you about the body no longer belonging to you,,,,I have more occupants than Trump Tower....They can't take your spirit however....unless you let them...so don't~
|
|
|
Post by janedough on Aug 18, 2007 20:56:21 GMT -5
Oh, she was just suffering from delusions of parasites. You know how those three year olds can be.
|
|
|
Post by friskers on Aug 18, 2007 22:17:21 GMT -5
The good thing I learned from this experience is that we can survive this and move on that we are very resilient that our bodies are not our own I also learned that my mind depends on my body to function properly, while all the other tenants, the flora and fauna that inhabit my body despite me, affect the functioning of my mind, rob me of energy and destroy my life I have nothing left and the good thing about it is that I am free Thanks friski for bringing this up. The bottom line for me of this experience is rediscovering that I am not my body and learning anew that I am not my mind -- either. But then, what is me? and where can it be found? i beleive we are divine spiritual beings, one way to get in touch with our souls is to be quiet or meditate.
|
|
|
Post by jwf on Aug 19, 2007 0:21:14 GMT -5
Great thread Friski. And you're looking goooood!
Like with Becky, one of the best outcomes of Morgellons is that we discovered that we had Lyme disease.
With that in mind, and with much help from many of you kind Souls, and much herbal study and trial and error, we (the wife and I) are probably healthier than we were before this grand- daddy of a life challenge.
Some of our friends are just now figuring out why we ap- peared out of sorts for several years--- now that they are seeing the news spots on Morgellons, and even Lyme disease is garnering more attention.
Like Malcolm in the Middle, we've reached the conclusion that all the terrible troubles we go through must be OK, if we learn something from them. In this case, it has to be a measure of compassion for the suffering of others, and learning to help where and when you can. It sure has been a wild ride.
We hope that there will be breakthroughs in diagnosis and treatment for everyone who is suffering from Morgellons and Lyme disease, so far largely neglected by our medical systems and governments. Blue Skies...............John
|
|
|
Post by DOCP on Aug 19, 2007 7:09:22 GMT -5
Gawd you guys... this is great to know you're able to think positively. I suppose I am as well about certain things in my life but Morgellons nor Lyme is not one of them. I could pretty much just say that I "second" everything Janedough has said. That's how I feel... I hate it... it sucks azz!! I've learned how to be terrified and sick and alone (quite a while before coming here and learning I was not alone) in this terror. I've learned what it feels like to be humiliated, degraded, unheard. I've learned how to watch everything I've worked for and loved to do and everything I wanted to be and experience... slip away. People slip away. I've learned that I can't fall in love perhaps ever again. I've learned how to keep saying it doesn't matter right now... but "right now" is turning out to be a very long time. I've learned that people let you down in life. I've learned how to be bitter and hateful and jaded... and resentful!! I've learned that people are cowards. That there are a ton of close minded sellfish money hungry power hungry liars cowards and will take advantage of the weak the fragile the helpless, they will turn their heads, and look away at people suffering. They will attempt to prosper and benefit monetarily or egocentrically at the expense of others. I've learned that my own family is no different. I've learned that I was waaaay to trusting. I've learned that you can miss out on things in life like when people you do still love have new babies, or showers, or weddings or graduations or even your own children's Christmas plays, and that... YOU WILL NEVER GET THEM BACK! Never have the chance to just be there. And not even because you wanted to witness it (even though you did), but just so they knew I was there. To just be there. Be in life. Without trying to stave off thoughts of confusion and fear of what is presently going on inside me... because it relentlessly reminds every minute of every day making it so hard to just enjoy even the most ordinary moment. I guess the one thing I've learned that's positive is that there are certain individuals that rise apart from the rest... Some of them Doctors, some of them friends you'd least expect, some of them strangers... that surprise you. All of them brave, compassionate, willing to stand up for others, for reasons other than their own benefit. I am always impressed with this board... the people on whom rally around each other. Whom start threads saying "can anyone help this person because they have nowhere to stay." And how we try to at least help with things we can actually do something about. And how we've formed committees on here and pooled our skills and resources and started rallies and how after coming here for years now... in general we as group in a dire circumstance... never give up. I never would have imagined the kindness of a stranger (of many), and over the even stranger new frontier info super highway internet no less... could come through so loud and so clearly. Emotionally, inspiringly, sincerely, humanitarily. So THAT is something nice I learned. But even so... not sure I would consider that a valuable life lesson. I know I know... I'm being awful. But now I'm feel a bit better. I cried while writing most of this... and I seriously do feel better. Perhaps I've just learned dumping negativity into this post is a bit like... after a new rain stops. I'll bet ridding ourselves of this (negative poisonous attitude/thoughts), will be part of the protocol for finally ridding ourselves of this hell. Hopefully it will just naturally happen once our bodies feel better. Our minds clearer. We'll all be so darned apprciative... it will be easier. And THEN I will list all the wonderful things I learned from my beloved Morgellons.
|
|
|
Post by abbienormal on Aug 19, 2007 8:02:41 GMT -5
Something that I thought 9-11 taught me but I guess I wasn't a Grade A student and needed some more schooling:
That ANYTHING IS POSSIBLE in this world.
|
|
|
Post by bugsy on Aug 19, 2007 8:09:21 GMT -5
Just gotta say. Wow guys. Deep sentiments on this thread. Must admit I bypassed this one due to lack of anything to contribute on a positive note. The one thing I have learned and guess I always knew deep down was "To thine own self be true." That we are only as sick as our worst secret. This disease forced me to take risks in my interpersonal relationships. To either suffer in silence and stuff down my own truth or risk it all and lose someone close. Forced me to risk trusting in another........risking REJECTIONS. On the most part. The ones who really matter to me came through with glowing colors once I came forward and was brutally honest about EVERYTHING. Not talking about strangers. Am talking about family. Was quite surprised and shocked that they stepped up to the plate and not only showed me understanding but support as well. Most of all my husband. I didn't want to risk losing him. For the longest time he didn't believe me and I thought I almost lost him...then I kept up the unrelenting need for HONEST COMMUICATION and dialogue regarding this subject until the UNTRUTH of everything being okay was purged from our relationship like a festering wound where all that was left was the reality which was far better and actually made us closer but in a different way. For only when you take real risks in a relationship and are willing to show the REAL YOU are you giving another person credit and opportunity to be a better person than you thought them capable.
Does that make sense?
~Bugsy
|
|
|
Post by abbienormal on Aug 19, 2007 9:59:56 GMT -5
Bugsy, you got that right!
|
|
|
Post by See Jane Crawl on Aug 19, 2007 12:50:24 GMT -5
Patience, Fortitude & who my friends really are!
|
|
|
Post by Carrie♥ on Aug 19, 2007 13:09:07 GMT -5
Reasonable that was a great post! Thank you!!! Bugsy...I see and feel what you're saying. Friski...you ever listen to Krishna Das? Check out the music sample from www.amazon.com/Greatest-Hits-Kali-Yuga-Krishna/dp/B0002O06PI/ref=m_art_li_0/002-8523340-7214403 the second (2) chant is fabulous!!! Namah Shivayah...I can listen to that on my CD over and over and over again. It's the best!!! When I get my schnit together that's the next CD you got coming! There are a couple other a'right chants on that CD but I prefer to just listen to this one over and over again. Great way to meditate. He does a lot with Yoga too, I think. What a cool guy with some cool experiences... www.youtube.com/watch?v=w9k1rkaXQC4&mode=related&search= I know it's not totally on the thread topic...sorry. It is in a way, Morgellons brought me so much peace and I am sorry to say in a strange way I am very grateful to my Morgellons. Just like your forgiveness quote which I love so much, first step to healing is to accept, forgive and almost appreciate. I get in to my quiet place and talk to myself. What was I suppose to learn, what have I learned...realize what has and is happening to my body and let that force help me through what's going to help me heal. If we listen we will find the answers. One of the first things the Buddhist teach is that we all have the answers in side us right!?! We have to learn to listen and accept the answers. It was that guidance and confidence in my inner voice that got me through the worse and held my hand leading me through every step of the way!!! Janedough, I am so sorry for what you are gong through right now. I wish I'd have had our group when I was there, I was a mess. I was on my own doing what you are doing now...I'd watch my babies sleep...for hours and hours watching what this disease was doing to their bodies. When I talk about it today it still brings uncontrollable tears to my eyes. It was like living in a hurricane, you can't stop it and the force just kept getting stronger and stronger and there is nothing, not one damn thing that you can do!!! I just realized last night where you are and I am so damn sorry. It's a horror it is, it is! The first ER visit to Portland Adventist warned me of what was to come when that ER Doc accusing me with his nasty judge mental stare of being on drugs said he was going to tell my PCP and my kids Pediatrician that I was there. It worried me and should have tipped me off but not enough. It didn't scare me enough though, it was a late night visit to the OHSU ER room that sparked CSD to visit me the first time. Here we are begging and pleading for help and no one is listening. Trust me sister I know your pain and you will get through this if you believe you will. Them bastards, all we do is want help and we are crucified for it. My folks, my Mother actually kept the fire burning...calling my kids pediatrician, calling CSD...they would visit my kids at school, talk to school personnel that new my babies and me. I had the one CSD worker escorted by the police one day because my kids and I were home, they could see the kids but I had fallen asleep soaking in the bath tub trying to find some relief from the never ending symptoms and progression of our disease. They thought maybe I killed myself...right!?! I'd never do that to my babies...just goes to show how sick they really thought my head was, in which it was but damn...all their added disbelief, crazy and drug accusations ON TOP of this disease made it almost too much to bare. Could you imagine what that did to my kids? On top of everything else we've got the police at the door, no one believes them either...Arianna still doesn't talk much about her disease. I wanted to take the easy way out many, many times...but no way...just like today. This possible cancer stuff doesn't make me fret a second, leaving my kids with out me makes me crazy sad and keeps my fight strong. Please know you are NOT alone!!! For some reason I'd like to think that you knowing there have been many others walk that path before you that have made it would bring you some relief, a touch of hope but having been there, I know it doesn't do much when you are so living in the moment. I have so much love and compassion for you today...I know first hand that hell you are living with. My autistic son cried about worms in his feet and jelly fish in his mouth and they called me f@cking crazy...huh! Yeah I'm a stubborn bitch, Morgellons taught me that!!! Jane, please let any and everyone know if you need anything. Ya'll just don't know how much torture this is when you are in the prime of your Morgellons and you watch your children suffer...beg for help and then you realize you can no longer beg for help if you do they will try to take them from you...no where to turn, nothing to do. No family support, no more friends. It was horrible...my very sick self, my sick kids, two sick dogs, no where to go, no money, no more job...it's some scary sh@t! You are strong Jane...if it don't kill you it will make you stronger! Do you have any family or friend support? You will get through this, this too shall pass! PLEASE let me know if you need anything!
|
|
|
Post by friskers on Aug 19, 2007 13:33:43 GMT -5
If it helps people to express their anger and hurt from having morgellons then by all means let it out here! We wouldnt be human if we didnt feel these emotions too!Repressing these emotions isnt healthy either. I do think we have to feel these feelings fully in order to rise above them . i am so sorry for all the pain and misery morgellons has caused people. For me too it has been the worst ordeal of my life and I cried all the time and hated life when this happened to me and turned my world upside down And it may be true you need to feel some wellness to appreciate some positives about this whole ordeal.....I know thats when I did. And for the people who are positive and learning inspite of being very ill well maybe your just spiritually more evolved than the rest of us and we can learn from you! Im so thankful for everyone whos opened their hearts here and shared......the good AND the bad!
|
|
|
Post by friskers on Aug 19, 2007 13:43:51 GMT -5
Carrie Yes I LOVE chants and used to go to a weekly group where we sang and chanted . I miss that so much and was one of the things I let go when morgellons came upon me. There was lots of hugging and love circulating and I was fearful of passing this along. But i loved the groupchanting and did it for years and miss that so much!
|
|
|
Post by liz on Aug 19, 2007 16:42:44 GMT -5
Wow~ those made me cry..yes..I think it is ok to let it all out....Thankgod we have each other...If it was not for you guys I would be dead right now~ I know that~Everything That everyone said are also my frustrations...and anger...so I don't need to say them again ...some days seem harder than others...just hang on tight everyone and know there is a LIz and Tom out there that love you~
|
|
|
Post by kiki on Aug 19, 2007 17:28:14 GMT -5
That there is a difference between being bitter and righteous indignation!! I told Toni Ive thrown temper tantrums that would impress a tired, hungry and cranky 3 yr old! Also at times what kept me going was waiting for the day to rub some noses in their sanctimonious bull poooop ;D
|
|
|
Post by janedough on Aug 19, 2007 19:16:31 GMT -5
Thanks so much you guys, you know, it IS hard to be positive when the kids have it and yet they just keep plugging along. Carrie, you hit the nail on the head with what I am going through this week. Not every week am I this weak, but all the frustration does seem to build up and not having any recourse leaves me feeling so angry. Even if doctors want to help, I believe their hands are kind of tied. Everyone on this board has suffered so much! Carrie, YOU ARE A STRONG MOM, and I know why. YOU HAVE NO OTHER CHOICE. I am sorry for all the suffering you went through. I wonder how many other moms will have to go through the same suffering before anything is done? I am TRYING to be the same mom I used to be. I feel so stressed out trying to pretend to my kids that everything is fine, because we have NO OTHER OPTION. Then I am so disappointed in myself for not being able to be the mom I used to be! Keeping the faith. Holding on to hope, it's pretty much all we can do. SO WE DO IT.
|
|
|
Post by Carrie♥ on Aug 19, 2007 19:51:46 GMT -5
Not every week am I this weak
Everyone on this board has suffered so much! Carrie, YOU ARE A STRONG MOM, and I know why. YOU HAVE NO OTHER CHOICE. Janedough I don't think and have never thought you are weak...I hope you didn't take my post that way at all! Our people...all what we've been through is far from weak! We've stood up for what we know is real and told them hell no DOP won't go! We are bionic...why? You are so right...we have NO other choice. Fight or lay down and die...not me. My babies won't ever see me lay down and die nothin'! If this cancer crap comes to play (which we will know exactly what this is tomorrow) they still won't watch me lay down and take a damn thing. No choice Jane, you are right, they leave us NO choice! Friski...I want to send you that CD. Krishna Das is a cool dude 8-)one more time Morgellons robs us of enjoying life. I think we've got to find others avenues to fill our life up again!?! Hard as that is...real hard when you got kids, especially a Kado!?! But he is love no doubt about that. I'm sorry you were robbed of something you so enjoyed. Are you going to start up again? Again Janedough, I feel you...I feel like not a good Mommy anymore either. Before I was the "Fluke Queen" they all, even all the neighbor hood kids called me "Queen Mothah!" Funny...at least I'm still queen!?! It's hard but you know...what are we supposed to do? It's hard but they will see and recognize as they grow. Kado is a happy boy no matter what. Arianna is a'right because she knows what we went through and I'm sick. She complains about it at times but she's a good girl. You're kids will see as they grow you did the best you could with what you had to work with. I hope. Hell, I hope that for me every day too!!! Just because now Arianna (Kado always does) loves the mess outta cause I think she's afraid I'm gonna die. There are times when she's angry with me and my obsession with our disease. She'll learn....she'll understand I tell myself that every day to keep my faith. Vivi you are FUNNY! I think we had our righteous day when Randy proved our fiber IS UNREMARKABLE and gave their asses a run for their money! I have some pretty good tantrums too...damn that and Daryl calls them "high blood pressure!?!" He's a brat though. I agree with you...I can't wait for the real day!!! Liz I feel better knowing there's a Liz and Tom that loves us...especially since ya'll are so close! This is a happy/sad thread. Bitter/sweet thread!?! Eye opening thread!?! Thanks Friski...sweet sexy thang !
|
|
|
Post by friskers on Aug 19, 2007 21:14:11 GMT -5
Carrie thanks for bringing back such sweet wonderful memories for me. The chanting in groups is extreemly poweful and would bring me to such tremendious and expansive heights of love I never knew existed and makes romatic love seem so small and confined in comparison. The hugs we shared were so heartfelt, pure .loving , long and meaningful even though often times it was with complete strangers! And today especailly i felt that same kind of love here with this group, my hearts been filled with so much love for all of you today! Even with all that said I dont feel moved to go back. Even though I dont feel extreemly contagious in a group stting like that I feel it could spread like wildfire and wouldnt take that chance. For those of you who may not know this ,theres a divine love in all our hearts that can be tapped into and felt that fills your heart and expands outwards until you feel a love so profound that you cannot contain it. Its the most incredible feeling that we all are really looking for whether we know it or not.And that is where true joy is found!! Call it God or whatever you want ....it is there for all of us! The past few months I have started to do some regular spiritual practices on my own and thats just fine . My vibration is starting to go back to where I was before i got this and Im feeling much lighter and am more than elated i really lost my way for a long time and feel like Im coming home again If you feel moved to send me the cd I would be more than grateful! I enjoy that type of music and chanting and probably will be chanting right along with them! ;D Thankyou soooooomuch!
|
|
|
Post by Carrie♥ on Aug 19, 2007 21:23:42 GMT -5
WoW Friski and one might think with all that sex talk and thought you aren't religious or don't hold any spiritual beliefs! I love that love...I feel that love for our people...all our people. I love Daryl like that...it is absolutely amazing that love I found that I had NO idea existed. Well it did, I only thought I could love my kids like that. Maybe it was the personal growth that has allowed me to love and accept this relationship and not fear the love. Love conquers all...I'm so happy to hear what you're doing. I need to do that more...to take better care of myself like that. I'm proud of you girl...that's NOT easy to do but once you get started it's like second nature isn't it, effortless. I'm proud to know you...we are a great, special group of freaks !
|
|