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Post by toni on Aug 9, 2010 11:40:44 GMT -5
No I sure haven't. But I'm sure many of us have been wondering
because we've not seen any posts in awhile, which is unusual.
Hope she is okay.
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Post by ctbarb on Aug 9, 2010 13:04:19 GMT -5
Yes, I have...they are trying to enjoy life for now...taking a rest from the constant research and writing. They are also seeing doctors over there, but it appears that they don't know much more or less than we do here! Most frustrating! Love, Barb  |
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Post by bannanny on Aug 10, 2010 14:30:08 GMT -5
If you talk to them again barb... will you tell them I love 'em both and I'm sending a big hug their way? Miss them here too, but I'm glad they're takin a break! If anyone deserves one, they do!
love ya's ~~ bannanny
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Post by scandi on Aug 12, 2010 19:42:45 GMT -5
Yes, I have...they are trying to enjoy life for now...taking a rest from the constant research and writing. They are also seeing doctors over there, but it appears that they don't know much more or less than we do here! Most frustrating! Love, Barb Ok thanks, the reason i asked is because im seeing the same doctors now and was just curious about how it was going. |
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Post by kammy on Aug 31, 2010 11:44:48 GMT -5
Hi all... I'm glad to see that some have inquired and missed us... lol I said, 'some'... Jeany wants me to start writing again...
As you witnessed, 'Kammy' woke up, and we've had to process what is happening, it takes time and there are steps that we must go through to... to deal with our findings and decide if they are now a new part of our belief systems, just like everything else we've ever adopted.
Like a child who was told red is blue and blue is red, we have to decide when we hear that 'blue is really blue' that when we investigate it and come to our own conclusions that this is true. We have to realize that so much of what has been presented to us... has been 'manufactured' to mold our belief systems, I'm finding by sorting through what is supposedly the real blue world is actually red.
I saw a youtube yesterday that this guy put 'things' in a good perspective using a walk in a forest and taking forks in the path as a good analogy, well... I can't find it right now, it was about surviving planet x and nibiru...
How in the world did I get there, what's that got to do with the baculovirus or the state of 'things'? Well... if you go in certain circles on youtube, you invariably end up there - the micro and macrocosms and you say... if you're a curious mind - 'what is this about?' and you investigate. Is it all far-fetched, conspiracy theories?... I don't think so, there's some truths to it, and how much you choose to adopt into your 'red/blue' purple world is up to you.
What he said in a 'nut-shell' was... that some of us wake up sooner than others. This statement is close to the truth - Some of us with this disease are more 'awake' than those that have little experience with it. Our whole damn realities have been rocked, what appears to be blue is obviously now red... we've complained of these anomalies, as examples; our doctors that are supposed to be caring and looking after our health, our scientists that should be warning us of what's happening to us and the world... some 'systems' supposedly put into place to protect us are totally non-functioning and working the opposite... etc. and the list goes on and on...
So... some of us through looking, researching, paying attention... noticing... that 'hey, things aren't quite right here!'... and we sound alarms for our loved ones to heed our warnings which only get us further distanced from them and other negative ramifications... made fun of, called 'crazy'...
This guy says, we're in a 5 step/stage process - stage 3 is the warning phase, phase 4 is the research phase and phase 5 is the acceptance and calming stage. I have moved from 4 to 5 in these past days, phase 5 includes losing our fears...
He uses the analogy that we're in a movie theatre and we think we smell a fire burning in the basement of the building, he asks, 'do we stand up and yell 'FIRE!' and scare everyone half-to-death and cause them harm by causing a stampede to the exits?... no, we think we smell a fire in the basement, we calmly go to the fire exits and make sure they are clear and stand near the button and sound the alarm in case we're correct.
We're all in this movie theatre together and we're all going to see this movie whether we like it or not... some of us are standing nearby to help, that's all. He says eventually... those that have cast us aside, ridiculed us, etc., will come to appreciate what we've had to say, our warnings and see the motivation behind our actions. We do this as a natural way to communicate to our loved ones that there is a possible danger coming or nearby that we are concerned about. Be aware that most people are in Phase 1 - he says... this phase is called... 'I don't have time for this crap' phase.
I wish I could find this youtube... anyway... we can't escape the theatre, we're here until the movie is over, we have to loose our fears in order to know some peace.
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Post by kammy on Sept 2, 2010 7:56:20 GMT -5
How many people here were given triamcinolone acetonide-cream to put on your lesions prior to your onset of Morgellons? Your doctor would have told you that as long as you use the cream your lesions or skin condition would go away, but as soon as you stopped using the cream, your condition would return?
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Post by fritolay66 on Sept 2, 2010 8:49:47 GMT -5
I was one. They tried to give me that years ago and was the start of a rocky relationship with my dermatologists. Which by the way were supposedly the best three in a tri-state area. (cough, cough)
I wasn't willing to blindly follow their prescriptions and didn't use anything without some research into it. I remember being livid when I found out it was a steriod and took the jar back to the office with a visit to the prescribing doc.
(chuckling) He was speechless with the admonishing I gave him and could not refute my information. I have a special place in my heart for the derms. Real special. Even after that we tried to maintain a patient relationship, but he literally destroyed any faith or hope I had for help from the derm's and was the final derm I saw.
Frito
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Post by toni on Sept 2, 2010 11:48:15 GMT -5
How many people here were given triamcinolone acetonide-cream to put on your lesions prior to your onset of Morgellons? Your doctor would have told you that as long as you use the cream your lesions or skin condition would go away, but as soon as you stopped using the cream, your condition would return? Kammy, that's exactly what my very first script was for the lesions. |
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Post by fritolay66 on Sept 2, 2010 14:26:53 GMT -5
I hope nobody used this. It causes quite the thinning of the skin in which is exposed to it.
Frito
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Post by kammy on Sept 3, 2010 6:30:15 GMT -5
I'm just wondering... we've never talked about it much. It's like the derms know something is out there - something incurable, something that this cream will make the symptoms temporarily go away, to mask it. I'm surprised they aren't questioning - 'What do these people have? Can I get it? Can my children get it?' Wouldn't you, if you were a skin specialist doctor?
I saw where this family has become sick from their swimming pool water, the doctors gave them a cream to make their lesions go away, it was mentioned that as long as they used the cream they would be ok, the article didn't mention the name of the cream. Of course, this is a multi-purpose mystery lesion cream... there is no direct correlation, just wondering...
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Post by kammy on Sept 3, 2010 13:08:53 GMT -5
I was reading the news and just saw this article, it pertains to what we've been saying all along in how we've been treated or should I say, not treated?... www.huffingtonpost.com/jerry-cope/no-safe-harbor-on-gulf-co_b_698338.html"In numerous cases BP has provided financial payments to institutions and individuals in exchange for them agreeing not to allow their physicians or staff to see, advise, or treat anyone sickened as a result of the well blowout." Oh yes! This is good to know, we can stop worrying!: 08-2-10 www.huffingtonpost.com/2010/08/02/limited-test-finds-disper_n_667896.html"The combination of oil and dispersants is no more toxic to sea life than oil alone, the Environmental Protection Agency announced Monday after conducting a new, but very limited, round of tests. EPA has no evidence that dispersants are entering the food chain." BTW - I read a couple of the patents on dispersants, there are baculoviral components involved in some of them and these mostly mentioned are partially made by our best genetic modification companies... oh yeah, good stuff. |
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Post by kammy on Sept 9, 2010 8:49:00 GMT -5
Not sure where to put this but, I can't stand it any longer, Jeany and I have been singing this for a while, thought I'd share it - We need a theme song... this one is a good one... lol
Morgs are in the air...
Everywhere I look around.
They're in every sight and every sound.
And I don't know if I'm being foolish
I don't know if I'm being wise...
But, it's something that I believe in
It's there when I look through my eyes...
Morgs are in the air...
In the whisper of the trees
Morgs are in the air...
In the thunder of the seas...
And, I don't know if I'm just dreaming...
I don't know if I feel safe
But, it something I must believe in
And, they're there when you call me insane.
Doomed, doomed, doomed...
Morgs are in the air
Morgs are in the air
Oh, oh, oh, oh!
Morgs are in the air
In the rising of the sun
Morgs are in the air
When the day is nearly done.
And, I don't know if I'm delusional
Don't know if I see the truth
But, it's something I must believe in
And, they're there when I reach out for you.
Doomed, doomed, doomed...
Just replace the words however you want to... ;D
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Post by toni on Sept 9, 2010 9:30:36 GMT -5
Kammy that's funny, I can imagine hearing those words
in place of the original words. ;D
And about that cream: triamcinolone acetonide-cream -
I think derms dole that out, because it's basically a "general"
topical that stops itching and inflamation (generally)
speaking or in "normal life"...but for Morgs, it seems to only aggravate
it. When a derm (imho) doesn't know what a
specific skin problem is, this topical seems to be like aspirins
to them in how they script it out.
And Frito's right, any "steroid" as this Triamcinolone, or
Mycolog, or...gosh there's a few different ones, Fluoncinolone
too...they will cause thinning of the skin with consistent use.
So, best to never use this on the face, (except for a few days)
IF one must, and that's it. It's sure not intended for prolonged periods of time.
But I'd sure not recommend this topical Triamcinolone AT ALL
for Morgs, it seems to worsen things big time!
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Post by bannanny on Sept 12, 2010 15:25:54 GMT -5
I for one am glad you're posting again kam... if not the research stuff you guys work so very hard on (and are appreciated for big time) then for your song... I LOVE IT!!
big hugs ~~ bannanny
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Post by kammy on Sept 13, 2010 8:06:57 GMT -5
Hi Banny! Missed you! I know about the song... it keeps coming back up to mind. We thought of another one yesterday going out to a fair, they were spraying the skies on such a beautiful day... made me angry and sad. I know there's nothing we can do about it, that's just the way it is and even worse - we don't know what will happen if they stop. This Pink Floyd song came to mind, "Another Brick In The Wall"... 'Hey youthere, leave our skies alone!'
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Post by toni on Sept 13, 2010 8:35:17 GMT -5
heheheh now the Brick in the Wall is playing in my thoughts, hhee
(that other song went too for the day) ;D
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Post by kammy on Sept 14, 2010 1:46:42 GMT -5
Jeany wrote some lyrics to "The Wall"... maybe, she'll come out and post them? We've been sick for a while now... got a nasty, pneumonia-like cold that won't go away, Jeany has been dizzy lately, we think it's hypoglycemia, her blood sugar is testing low.
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Post by bannanny on Sept 14, 2010 16:18:31 GMT -5
I hope jeany's seein a doc... I hope you both are. Screw morgs... go in and find out why she's dizzy and why you're both still sick ok? I mean morgs may have a hand in us getting sick, but at least there's remedies for the ailments that are known!
Sending you both a big warm hug ~~ bannanny
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Post by kammy on Sept 17, 2010 7:45:09 GMT -5
We haven't seen the Lyme doc in a while, we're overdue. I was taking antibiotics for this 'cold' when our last appointment was due so we decided to not go because I think my blood tests would not be accurate while I was taking them. This is some sort of bacterial cold that one family member brought home to share with everyone, all of us except Jeany, have taken antibiotics... it's slow to leave.
As far as the baculoviral aspect of Morgellons, it could be a long time before scientists are allowed to help us. We can see from the scientific description and from our meager observations that something like this is at work inside our disease, of course, we can't prove it, and we will eventually need the specialist scientists to come to our aid to help us.
I think it is a shame the way things have progressed in our modern day, so-called 'civilized' world. We, the 'little people', what can we do but try to help ourselves and each other to get through this the best we can? We need to show as much love for our fellow human as possible. As people's awareness of what is going on around them increases, I believe, so too, will the knowledge of what has happened to us. We must be patient as the story unfolds, it unfortunately seems - that we have little control in the matter.
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Post by bannanny on Sept 17, 2010 13:44:29 GMT -5
Unfortunately, you said it very well kammy.
love you ~~ bannanny
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