board activity

[dereck72]

Nice to hear an update from you LC,I know what its like to not want to post I been dealing with this stuff for years and years and it gets sooooo frustrating.
Its almost like I feel from hitting so many brickwalls and deadends theres not much I have to contribute. I do forget sometimes that their are new members who are new to all this and having very similar feelings I had at the start of this. Sometimes I forget that, and spend too much time reading not enough contributing. Sometimes I'd don't come around much because at this point thats not good either. I guess I was just very curious whether or not most the older posters where still around or if they got better or god forbid worse.

[Franky]

Dereck I really don't think you have to feel to bad about it. Besides the points I listed before, many other members are quite content just joining and just reading and learning.

I myself miss many old friends from days past.

Many people don't necessary have a need to chat about morgellons , but still like the fact that they can log in and still feel they are part of the community, and just read.

------------------------------------------------------------------------
Thank you for the good words there morgllonsfriend but like some of the senior member's have explained, we are basically a community chat for support and communication among people.

Believe me its hard enough just running this site with all the different personalities and updates, spam, emails, etc.., let alone trying to get into other avenues would be impossible at the moment.

But you do pose some interesting ideas and maybe done the road we can open up specific sections if need be.

Right now at the moment I am updating the front end of this site, once I am done there, I can back and start fixing and helping Carla with the forum again.

[Bee]

I have noticed on this site and others,that not so many posts are even viewed.
On the geography map in does not come close to the 60,000 suspected cases I read exist.
I am not a registered morgie. This is the only site I've joined. It is because I am/was afraid to be tracked by my IPS by other members of a forum where I am annonymous Or the government for experimental purposes etc.

Is it possible to be tracked through this site ?
Inquiring minds want to know. Perhaps more people would come out if they felt secure. I came out to add to the morgie population in hopes of gaining more attention from the gov for more money for research. If this site is secure perhaps we could campaign for more members .

[hellalone]

LadyC, I too have messages that no one has replied to. And I believe I may be one of the ones that did not reply to you message. I loose the original post and cannot find it to reply and read more.

Some of us are just lurking. I read for about 9 mo. before joining. I also have not registered with the MRF. I am afraid my computer and my life would be harrassed or broken.

I do love this forum. When I first found out what I had (thru this site), I was sort of lifted up from the deep dark hole I was in. I could not be were I am (physically and mentally) if it were not for this board and all these wonderful people!

Hella

[lostintime]

I have wanted to post my story but have been too sick to do it. I also have problems thinking clear enough to wright it down. I have some great photos to share but dont know how to put them on here.
I have been suffering for four years but only figured out the problem months ago.
I will get to giving you my story and photos soon.

[Sadsack]

I understand why some people may not want to/are afraid of registering with MRF and OSU. I respect that, but at the same time I don't think your fears are founded (sure hope I'm wrong - I'm all over the place!)

There may be others here who have not registered simply because they never got around to it or maybe didn't know. I hope that those who feel OK about doing it but haven't gotten around to it do so. I think it is important that the CDC, etc, have a better sense of how many people there really are with this. I am SURE it is way under-reported.

Of course, having a better idea of how many of us there are doesn't mean that they will move any quicker, but all we can do is try and hope for the best.

After 2 1/2 years, it still blows my mind that they can still deny this. Something just stinks with all this.

SS

[dereck72]

I would hope people register with MRF...but I have noticed the numbers havent increased at all the past few years...well maybe slightly. Either way its really the only guage we have to jusdge how this is spreading. I can tell you I havent recieved any unwanted emails or spam as a result of registering if that is a concern to some.

[Sadsack]

Good to hear from you - you've been quiet for awhile!

My sort of sister-in-law has had itchy, bleeding skin for about a year. She knows about Morgellons because of me, and is quick to say "it isn't Morgellons - it's 'nerves'". (No, she's not a doctor - lol).
So I've been researching "itchy skin" for conditions other than Morgellons to send her so that she might at least get checked out medically.

I'll tell you, there are so many conditions that SHOULD be "normal" but are not responding to interventions that would usually clear them. People are also posting on medical message boards about undiagnosed, intractable itching and Morgellons is never suggested. Then there is that foot blog...

So in addition to the people who know they have Morgellons and haven't registered, there is this other large group flying under the radar. And the ones who don't have computers.

The CDC is not making this reportable because they are trying to suppress it for as long as they can. We are the only ones who can change that.

SS

[dereck72]

Yeah been quiet but still here lol...not much changed. I hear you about CDC and your concern as to why they are so hush hush as well as slow to release any updates.

[pdidit]

Hi all

I am one such person who has not been able to post much within the last 7 months. And I will speak for myself when I say that there were many reasons:

For one, I was so overwhelmed with how my life was spinning out of control, not only with Morgellons, but the aftermath of leaving my home...to this day, I cannot go in there without seeing the infection and having symptoms all over again even after high heating the house [only once] and major spraying and cleaning. I can only assume that it is because i was living in an area with a high water table and the yard and house were full of moisture, therefore mold.

And this is just one reason...mostly, I have been feeling like I am living in a real live poltergeist movie. For ex., I finally found a small condo to rent that was in my price range. The first week I was there, the washing machine overflowed not once, but TWICE all over the wood floors, going under kitchen appliances etc. The landlord said he has never had any problems with the washing machine in the five years he has lived there. Then the movers used too small of a flatbed open truck to move some of my furniture into storage....all of it fell out in the road, stopping traffic while they tried to pick up the pieces. I am heatbroken as one of the pieces was a hand painted one of a kind cabinet for a TV. But guess my lesson is that this is only 'stuff' and doesn't really matter in the relative scheme of things. All these kinds of things are not new to me and have continued for over five years. I say enough is enough, but it just keeps happening--I had major plumbing problems in my old house, that I now have to give up. But it doesn't seem to matter where I am, '**** happens"

So I guess what I am saying is that I think many might be in the same boat--people are either so freaked out or just overwhelmed and too sick to post...just my opinion anyway. Same reason that none of us can actually band together to get heard and make a difference...too damned overwhelmed with treating the symtpoms and dealing with the ripple effect of the devastating effects.

xxoo
Pdidit