Introduction and Hello by Cindy Casey

[Cindy Casey]

I don't remember having ever properly introduced myself at this forum so here goes. My name is Cindy Casey and I have a bad case of Morgellons. I am a registered nurse with a background in critical care for 16 years at California Pacific Medical Center. I have tried just about every kind of treatment available from Acupuncture to Zithromax and although the severity of my illness waxes and wanes it is still with me. I was healthy when this went full blown for me. It was around 2003 when I got lesions all over and discovered the pesky filaments and black specks. Looking back I know that I had a bout with this is 1997 and maybe even earlier than that.

My husband (Charles Holman) and I were with the MRF initially where he served as Board Chair. In 2006 we (mostly my husband's work since I was so sick) started our own organization to promote recognition and research of Morgellons. He titled it The New Morgellons Order. Charles died suddenly of a heart attack in 2007 and I have carried on his mission for Morgellons. In honor of him, I added the name The Charles E. Holman Foundation. The organization is committed to medical education, public awareness, and funding research.

We hold the Annual Scientific Medical Conference on Morgellons and have set the date for the 4th annual conference on Morgellons to be held on April 2, 2011 in Austin Texas. This event has been beyond successful in many ways and I hope that some of you might be able to attend.

I still struggle a lot with bad lesions and the torments of Morgellons but somehow I manage to get by with a little help from my friends. I may not get the chance to drop by here much but from time to time I would like a place to post Morgellons pertinent information.

I am happy to meet you all and I know we have a common denominator that is difficult for the general population to understand.

Cheers!

Cindy Casey

[Sadsack]

Cindy -

I just noticed that you've been a member for almost 4 years - about time you introduced yourself !

Seriously, though, most everyone knows you and your famous legs (too bad you aren't getting royalties)! I love having you post here and hope you can do it more often.

In case some don't know, Cindy's story was profiled on Discovery Health's "Emergency ER". There were three stories on the particular show entitled "Nothing to Sneeze at", but the Morgellons story was called "String Theory". To date, it is still the best show on Morgellons. It addressed the fact that Cindy was thought to be delusional by some doctors, but the show never intimated that she might in fact be. It was so validating.

SS

[dizzy dame]

I read your story by Charles some time ago. It may have been a blog? anyway Nice to see you over here.

I keep wondering how a Dr. or anyone can say a person with fibers and lesions covering them can be delusional! Makes no sense whatsoever. They are looking at the evidence that something very wrong is going on and are they not seeing it? Talk about being blind!

LOL! I had another point to make and in typical morg fashion, forgot what it was. Maybe I will remember later. DD

[Cindy Casey]

I should have introduced myself a long time ago but I have never been a regular member. Just pop in from time to time. Thank you Sadsack and Dizzy Dame for the warm welcome.

Yes, that diary my husband wrote of our early struggles with this is still on my website. I hear from so many people who could relate to what he was writing. I had no idea then that I'd still be struggling with this today. My husband was a saint. he took such good care of me and assured me that this was not in my head and that I was not delusional. Don't know where I would've wound up without him by my side during those first few years. I was so scared and I couldn't believe the way I was being treated by the medical community ...esp. derms and ID docs. I have been on disability now since 2005 because of Morgellons. My life has changed drastically but I will stand my ground raising awareness and promoting recognition and research for as long as I am able!

In the beginning we posted on Lymebusters but both of us got the boot from there back in 2005 (?) as I "hijacked a thread". I hope you are more forgiving here as I tend to wander off thread topic sometimes. Actually, I feel I was innocent of the mistake there. What I did was mention OSU and that Morgellons research could be directly funded in a thread that was intened to raise $ for the MRF. We both got banned from LB and became members of The Morgellons Sanctum. This provided a great place for kindness and support until recently it got invaded by marketers and pretenders and was forced to close.

So here I am and I am happy to be here among all of you who share my Morgellons journey. Thanks again ladies for making me feel welcome.

Cindy

[Katinka]

Hello Cindy, welcome to MDR. Kind of funny, cuz you've been here before and I guess everyone knows you except for the newbies among us, so it's good you officially introduced yourself. I believe, people here should also know how much work, time and effort you put in waking awareness. But not only that, you do much more with the Foundation and all and I personally would like to thank you very much for all you're doing.

One thing I was wondering about....if those people who 'hijacked' Morgellons Sanctum were the same that showed up here not so long ago?..They stirred up alot of trouble but some eventually left or got banned. Just wondering.....

Anyway, I'm glad you're here and even if it's only once in a while.

Kat

[tcmgpt13]

Kat, I am glad you qualified what you said with "some" got banned, because it would appear that "some" did not and are still here.

Welcome Cindy. I know I have seen you here before too. As for wandering off topic no one has been banned for that as it's a regular occurrence on MDR.

Originally Posted by Katinka

Hello Cindy, welcome to MDR. Kind of funny, cuz you've been here before and I guess everyone knows you except for the newbies among us, so it's good you officially introduced yourself. I believe, people here should also know how much work, time and effort you put in waking awareness. But not only that, you do much more with the Foundation and all and I personally would like to thank you very much for all you're doing.

One thing I was wondering about....if those people who 'hijacked' Morgellons Sanctum were the same that showed up here not so long ago?..They stirred up alot of trouble but some eventually left or got banned. Just wondering.....

Anyway, I'm glad you're here and even if it's only once in a while.

Kat

[jonsi]

Cindy wrote "In the beginning we posted on Lymebusters but both of us got the boot from there back in 2005 (?) as I "hijacked a thread"."


Morgellons Sanctum is another site... Cindy are you still posting on or supporting that site?

In the white light,
~jonsi

[Cindy Casey]

Hi Jonsi, Kat, TCM, and all,

About the marketing at the Sanctum...I don't know if was the same people that caused trouble here too. Likely so I guess. Jonsi, I think the Sanctum (or a version of the sanctum) is trying to recover and I've posted a couple things there but I haven't been there much. I think there were still a lot of problems. I hope it will get ironed out but I don't really know much about it.

Comforting that I already know several of you. : )

Thanks for the understanding about my tendencies to wander off topics too!

Cindy

[Baraka Obam]

Cindy no worries you are at the topic wandering capital of the world here, topics start with moon frogs and end up with malarkee.

Seeing that Christmas is coming and your new here maybe I better go over my Christmas list with you

1. a new quality video microscope with wide view and good software.

2, a dark field microscope with video a inexpensive one will do

not too much to ask for oh yeah, and a team of scientists, and a fully stocked laboratory ,,,,,,,,,,,,,,,,,,ahhhhhhh what a good dream

[jonsi]

Hi BO!

Cindy has been here for a long time member here (4 years!) & has been working in this "Morgellons" professionally for a long time... I doubt she wanders off topic at all!!!!

She has an agenda....

In the white light,
~jonsi